Upcoming things to sign up to get involved with or make your voice heard thru surveys and public comment!
Please take 5-10 minutes to fill out the Regional Transportation Public Input Survey. Your feedback and input is valuable and important. This survey will help identify the transportation needs and barriers you face every day within your county and across county lines. Access to jobs, medical care and every day essentials continues to be a struggle for many people across Ohio. Your feedback will help address how we work toward filling those gaps and unmet needs. RCRPC is charged with developing a Regional Coordinated Transportation Plan for Region 5, an 8 county region that includes; Ashland, Crawford, Huron, Knox, Marion, Morrow, Richland and Seneca county. The Regional Coordinated Plan will focus on increasing transportation efficiency, coordination and collaboration from county to county. If you live, work or travel in/to/from any of these counties, use public transportation or work with individuals who use public transportation, we want your feedback! To access this survey, please click the link below. The survey will remain open until April 1. Please share! https://forms.gle/gFYZRZ5Cpx8KD6ct8
We Thrive Together a virtual social club is offering a coloring contest here is the link to learn more.
Northeast Ohio Medical University is looking for people with disabilities to participate research study on gynecology services and how to improve them. If interested please click link here.
Ohio Department of Transportation ATTN: We are now accepting public comments on the draft 2026-2029 Statewide Transportation Improvement Program (STIP). The Draft STIP is available for review and comment online from March 11 to April 11. Help improve Ohio and let your voice be heard today! https://www.transportation.ohio.gov/programs/stip/26-29
Down Syndrome Association of Greater Cincinnati is always looking for new and innovative ways to fulfill their mission. They are looking for feedback www.dsagc.com/survey
Events around Ohio to check out week of March 17th 2025 to March 22nd 2025
Monday March 24th 2025
We Thrive Together Discussion on Anxiety and Depression 11:00am-12:00pm join thru this link check out their website for more events.
We Thrive Together Discussion on Relationships: Self Confidence 3:00pm-4:00pmto join click Link
Ohio Advocacy Heartbeat Meeting 4-5pm join by clicking this link to our zoom.
Tuesday March 25th 2025
The Budget Is a Moral Document Advocacy Day, Tuesday, Mar 25 · 8:45 AM–3 PM at Ohio Statehouse in Columbus, Ohio.
We Thrive Together Tech Talk: Wood County DD Technology for Fall Prevention 11:00am-12:00pm click this link to join.
DODD Community Talks 1:00pm-4:00pm to Register click on this link the event is at Butler County ESC Butler County Educational Service Center 400 N Erie Hwy Ste A. Hamilton, OH 45011
Medicaid on the Chopping Block: Advocacy Updates, Tuesday, Mar 25 · 3–4 PM To register for the event click this link .
Arc of Ohio Legislative Reception, Tuesday, Mar 25 · 4:30–6 PM at Columbus Statehouse Columbus, Ohio.
Wednesday March 26th 2025
CJFS LONG-TERM CARE FORUM, Wednesday, Mar 26 · 9:30–11:30 AM to register Through this link .
DD Awareness Proclamation Richland County check out more at this link this is from 9:30am-10:30am
DD Awareness Rally in Ravenna, Ohio. 10:00am-11:00am
We Thrive Together Tech Talk on Smart Home Security Cameras, Ring, Nest, Wyze join through this link it’s from 11:00am-12:00pm
Area on Aging District 7 Advisory Council Meeting 1:00-3:00pm 1 Acy Ave Jackson, OH 45640, USA. For more information: 1.800.582.7277 info@aaa7.org
Athens County Board of Developmental Disabilities Awareness Fest 6:00pm-8:00pm The annual Developmental Disability Awareness Fest at the Athens Community Center will be on Thursday, March 27, from 6 p.m. to 8 p.m. The Athens County Community Singers will start the evening with a performance. Join us for an evening celebrating community partners and friends! If you would like to showcase your services, Flyer for reference Disability Awareness Fest 2025.pdf
Friday March 28th 2025
Addiction and Policy Forum in Chillicothe, Ohio check out this link for more details.
Disability Rights Ohio Budget Review 3:00pm please contact Brittanie Maddox at DRO for more information bmaddox@disabilityrightsohio.org
Saturday March 29th 2025
No Known Events
Helpful Information by National, State and County Agencies and Organizations for People to Read
Ohio Department of Aging Put out an Adult Day Care guide please check out this link to read it.
Artists with Disabilities Access Program: The Artists with Disabilities Access Program (ADAP) provides funding that gives individual artists with disabilities the resources they need to further their artistic development. Creative expression by artists of all abilities is essential to building dynamic and diverse communities throughout Ohio. ADAP awards help artists with disabilities advance their artistic practices, making Ohio a more accessible and inclusive place to build an artistic career. Application Deadline: May 1, 2025
Administration on Community Living has put out information on Nutrition for older adults check out the link to this information.
Center for Family Involvement has made a post about accessibility in social media please check it out thru the link here.
Central Ohio Area Agency on Aging will transition from operating within the City of Columbus’ Department of Recreation and Parks to a stand-alone Regional Council of Governments by 2026. This shift will enable COAAA to better serve its consumers — older adults and people with disabilities — within its eight-county region while expanding services and launching new programs. Learn more in today’s news release: https://bit.ly/3Fuz60M
OSU Nisonger put out a video series on Smart Homes on this YouTube link for people learn about Smart Homes and Independence.
This was shared by Butler County Board of Developmental Disabilities Kings Island ‘s accessibility guide has changed and we want to make sure you have all the details before visiting this summer! One of the major changes is the accessibility card! Individuals will now have to get prior approval from a third-party system that requires a doctor’s note. To make sure your prepared, please take a look at the Kings Island accessibility guide: http://www.visitkingsisland.com/accessibility
This Week in Awareness
March is DD Awareness Month wear Orange one day to show awareness and make social media post.
Each week we want to highlight advocacy wins of the week on our page that we see happening around Ohio. An advocacy win is something good that happens in the world of advocacy or self advocacy. If you want to share something that happened in the world of advocacy in Ohio please email us we will include it in our weekly wins in Advocacy Post next week.
The American Heart Association Shared about how they had a successful lobbying and advocacy day at the Columbus Statehouse check out their Facebook post online.
Ohio Domestic Violence Network shared their advocacy successes on there Facebook post
HR37 to designate March as Multiple System Atrophy Awareness Month was approved by Ohio House of Representatives.
In Hamilton County a local organization helped make adapted skate devices to help people with disabilities be able to skate with support.
Upcoming things to sign up to get involved with or make your voice heard thru surveys and public comment!
Medicaid Waivers Posted for Public Comment Attention: Providers, Self-Advocates, Families The SELF (Self Empowered Life Funding) waiver renewal and the Level 1 and Individual Options waiver amendments proposed for adoption on July 1, 2025, are a result of stakeholder engagement between the Department of Developmental Disabilities (DODD), the Ohio Department of Medicaid (ODM), people receiving services and families, advocates, and associations. DODD is seeking your input on these amendments; summary documents, the proposed amendments, and information on how to submit your comments can be found at:
As part of the waiver amendment process, the public can comment on the proposed amendments. The public comment period is March 4, 2025, to April 3, 2025. Comments must be received by midnight on April 3, 2025.
Please take 5-10 minutes to fill out the Regional Transportation Public Input Survey. Your feedback and input is valuable and important. This survey will help identify the transportation needs and barriers you face every day within your county and across county lines. Access to jobs, medical care and every day essentials continues to be a struggle for many people across Ohio. Your feedback will help address how we work toward filling those gaps and unmet needs. RCRPC is charged with developing a Regional Coordinated Transportation Plan for Region 5, an 8 county region that includes; Ashland, Crawford, Huron, Knox, Marion, Morrow, Richland and Seneca county. The Regional Coordinated Plan will focus on increasing transportation efficiency, coordination and collaboration from county to county. If you live, work or travel in/to/from any of these counties, use public transportation or work with individuals who use public transportation, we want your feedback! To access this survey, please click the link below. The survey will remain open until April 1. Please share! https://forms.gle/gFYZRZ5Cpx8KD6ct8
The Breaking Silences Advocacy Committee created a survey to understand the experiences and get personal stories of people with disabilities who have accessibility issues with online meetings. The goal is to use the stories to create a training program for businesses to help make meetings more accessible for everyone. All responses will be anonymous and no one outside of the Breaking Silences Training Materials Workgroup will see the results. Please fill out form linked here .
We Thrive Together a virtual social club is offering a coloring contest here is the link to learn more.
Northeast Ohio Medical University is looking for people with disabilities to participate research study on gynecology services and how to improve them. If interested please click link here.
Ohio Department of Transportation ATTN: We are now accepting public comments on the draft 2026-2029 Statewide Transportation Improvement Program (STIP). The Draft STIP is available for review and comment online from March 11 to April 11. Help improve Ohio and let your voice be heard today! https://www.transportation.ohio.gov/programs/stip/26-29
Events around Ohio to check out week of March 17th 2025 to March 22nd 2025
Monday March 17th 2025
Happy St Patrick’s Day
Assistive Technology Resource Fair in Lancaster, Ohio hosted by Fairfield County DD. 10:00am- 2:00pm
Disability Rights Ohio Legal Clinic for parents of children with disabilities. The topic is- Attendance, Truancy, and Discipline: What Parents Need to Know. You can learn more and register to attend at lawyers4students.com/legalclinic
Charting the Life Course 1 page Learning Event with Self Advocates 12-1pm register through this link provided.
Wellness Managing Stress Workshop on We Thrive Together from 11:00am-12:00pm
Virtual Training: Creating and Signing into Accounts on We Thrive Together from 6:00pm to 7:00 pm
Tuesday March 18th 2025
What is Occupational Therapy? 10:30am in Jackson County Senior Center in Jackson, Ohio hosted by AAA7
Tech Talk: Wood County Board of DD Assistive Tech for Elopement on We Thrive Together from 11:00am to 12:00 pm
Family University Blind/Visually Impaired/DeafBlind Zoom Meeting on March 18 at 6:30 to 7:30pm Join us as we learn from Rachel Schulz, a member of the Center for Excellence, who will discuss Universal Design for Learning, (UDL), why it’s important, is your child receiving UDL, and why UDL is helpful for students. Part two of the session will include Dr. Al LaBarre sharing on chapter 7 of the book, “All About IEPs- Special Factors.” Register today: https://zoom.us/meeting/register/tJEucO-rrDMpHNYYXswBA_nG7nOTYPPiE5NQ#/registration
DD Community Talks Cuyahoga County 1:00pm-4:00pm 4415 Northfield Rd., Warrensville Heights, OH 44128 Register through this link https://reg.planetreg.com/E102214835173214
DD Community Talks Region 6 1:00pm-4:00pm 4325 S Green Rd, Highland Hills, OH 44128 Event Details Join us for the DD Community Talks – an exciting in-person event series held across Ohio! Hosted by the Ohio Department of Developmental Disabilities. These events provide an opportunity for people with disabilities, families, and community members to network, share experiences, and explore resources to support disability services in their regions. Agenda • 30 mins: Check-in/Networking • 30 mins: DODD Presentation • 90 mins: Table Talks • 20 mins: Wrap up & Next Steps Let’s connect for the disability community! Registration Link https://reg.planetreg.com/E102214835173214
Portage County Awards Ceremony for Direct Support Professional of Month 5-6pm in Portage County, Ohio.
People First of Northeast Ohio meets 6:30pm to 8:00pm People First is a self advocacy group for Adults with IDD (Intellectual and Developmental Disabilities) in NE Ohio. They care about having our voices heard, empowering one another, nothing about us without us, Education, Equality and Inclusion. They meet virtually. For more information contact amy.mordaunt@thearcofohio.org
Thursday March 20th
OSDA Regional Meeting. At the Happy Day Services Building 2500 Brady Lake Rd, Ravenna, OH 44266, USA Information: Registration required : email events@portagedd.org or call 330-296-2839 ext. 3148
Montgomery County Parents and Advocates Advisory Council 5:30pm-8:00pm Online Video Meeting https://www.mcbdds.org/Calendar.aspx?EID=7420&month=3&year=2025&day=24&calType=0 MCBDDS hosts an online Parents & Advocates Advisory Council (PAAC) meeting regularly to provide people with developmental disabilities who receive services, their family members and guardians the opportunity to discuss issues of interest with MCBDDS leadership on a regular basis.
Threats to Medicaid Webinar 10:30-11:30 am Description Medicaid is a critical safety net in Ohio, providing essential health coverage to millions of Ohioans—including low-income families, older adults, and people with disabilities. As a joint federal-state partnership, Medicaid helps ensure that Ohioans can access primary care, prescription medications, and long-term services while stabilizing the state’s health care system by reducing uncompensated care costs. From proposed work requirements to possible funding reductions, Ohio’s Medicaid program could change drastically. Join Medicaid Policy Fellow Brandy Davis on March 21 at 10:30 to explore the threats to Medicaid. To Register https://us02web.zoom.us/webinar/register/WN_rHtp8U_1RMO9C0eKScKeqw#/registration
World Down Syndrome Day! Wear Cool socks and post photos on social media!
Disability Rights Ohio Budget Review 3:00pm please contact Brittanie Maddox at DRO for more information bmaddox@disabilityrightsohio.org
Saturday March 22nd 2025
No Known Events
Helpful Information by National, State and County Agencies and Organizations for People to Read
Ohio Department of Aging Put out an Adult Day Care guide please check out this link to read it.
Artists with Disabilities Access Program: The Artists with Disabilities Access Program (ADAP) provides funding that gives individual artists with disabilities the resources they need to further their artistic development. Creative expression by artists of all abilities is essential to building dynamic and diverse communities throughout Ohio. ADAP awards help artists with disabilities advance their artistic practices, making Ohio a more accessible and inclusive place to build an artistic career. Application Deadline: May 1, 2025
Administration on Community Living has put out information on Nutrition for older adults check out the link to this information.
Center for Family Involvement has made a post about accessibility in social media please check it out thru the link here.
Central Ohio Area Agency on Aging will transition from operating within the City of Columbus’ Department of Recreation and Parks to a stand-alone Regional Council of Governments by 2026. This shift will enable COAAA to better serve its consumers — older adults and people with disabilities — within its eight-county region while expanding services and launching new programs. Learn more in today’s news release: https://bit.ly/3Fuz60M
OSU Nisonger put out a video series on Smart Homes on this YouTube link for people learn about Smart Homes and Independence.
Upcoming Ace! Information Session! Ace! is a program to help The Ohio State University students with autism or similar communication difficulties confidently navigate the college experience. This is done by coordinating services that foster self-determination, social communication, and campus connections. Ace! staff will assist students in achieving academic, social, and post-graduate goals at The Ohio State University. When – March 17th, 2025 at 7pm Where – In-person at the Nisonger Center OR virtually via Zoom (please fill out interest form) Questions? Email – aceprogram@osumc.edu Interest Form – https://bit.ly/3FnwsK7 Visit our website here. https://bit.ly/4iFCUKJ
OSU Nisonger did a talk on Insomnia with Youth with Autism please check out video here of the talk.
This was shared by Butler County Board of Developmental Disabilities Kings Island ‘s accessibility guide has changed and we want to make sure you have all the details before visiting this summer! One of the major changes is the accessibility card! Individuals will now have to get prior approval from a third-party system that requires a doctor’s note. To make sure your prepared, please take a look at the Kings Island accessibility guide: http://www.visitkingsisland.com/accessibility
This Week in Awareness
World Down Syndrome Day on Friday wear cool socks and post to social media
March is DD Awareness Month wear Orange one day to show awareness and make social media post.
Each week we want to highlight advocacy wins of the week on our page that we see happening around Ohio. An advocacy win is something good that happens in the world of advocacy or self advocacy. If you want to share something that happened in the world of advocacy in Ohio please email us we will include it in our weekly wins in Advocacy Post next week.
The Dayton Institute of Art and Montgomery County Board of Developmental Disabilities partnered to add a changing table to the Dayton Institute of Art. check out the Facebook post about it.
A couple weeks ago, one of the cofounders of Ohio Advocacy Heartbeat Dawn asked for the state budget information in an accessible format and she received that . We want to give a shout out to the Ohio Legislative Service Commission Wendy Zhan and thank her for taking time to make sure that accommodations were available.
Quiet hours are expanding in 2025! The Columbus Zoo and Aquarium is proud to enhance our commitment to inclusion and sensory accessibility by now offering Quiet Hours the first Sunday of every month throughout the year starting March 2, 2025! For the first four hours of operation, guests will be able to enjoy a calmer, more sensory-friendly environment with reduced sounds, music, and visual stimuli. During Quiet Hours, the following options are also available: 🎧 Sensory kits for rent with a refundable deposit 🎢 Select attractions with reduced noise and visuals (seasonally available) In addition to Quiet Hours, the Zoo will also offer a few sensory-friendly events throughout the year, including: 🔹Sensory-Friendly Easter Bunny Experience – April 13, 2025 🔹Zoombezi Bay Quiet After Hours – August 22, 2025 🔹Blind, Deaf, and DeafBlind Accessibility Day – September 7, 2025 🔹Sensory-Friendly Light Stroll – November 18, 2025 🔹Sensory-Friendly Santa Experience – December 7, 2025 To plan a more sensory-friendly experience anytime of the year, visit https://www.columbuszoo.org/accessibility
Starting this month on Thursdays we will be posting about a different advocacy group across the state to share about them and what their mission is and how people can join. Stay tuned for more details.
Upcoming things to sign up to get involved with or make your voice heard thru surveys.
The Ohio Arts Council (OAC) is accepting grant applications for several grant opportunities, including those within the Artists with Disabilities Access Program (ADAP). This year, Art Possible Ohio will provide technical assistance to OAC for the ADAP grant! This funding gives artists with disabilities the resources they need to continue their artistic development 🎨 The application deadline is May 1 For more information visit: https://oac.ohio.gov/grants/10-grant-opportunities/40-artists-with-disabilities-access-program
Hey Dads! Check out this survey from Ohio Department of Developmental Disabilities! Your input could help inform state level decisions for support for children with developmental disabilities: From the department about the survey “The Ohio Department of Developmental Disabilities continues to build on a collaboration among state agencies, communities, and other networks to ensure fathers of children with developmental disabilities are supported, engaged, and empowered. As work moves forward, we want to know: What are fathers’ current perspectives? What are fathers’ experiences in systems that support their child with developmental disabilities? What do fathers want? What do fathers need? How do systems and organizations best support fathers of children with developmental disabilities? If you are an Ohio father of a child or children of any age with a developmental disability, please take the short A Dad’s Perspective survey to share your experiences. The 2025 A Dad’s Perspective survey will be open until March 31.” https://loom.ly/b_ImpfE
Please take 5-10 minutes to fill out the Regional Transportation Public Input Survey. Your feedback and input is valuable and important. This survey will help identify the transportation needs and barriers you face every day within your county and across county lines. Access to jobs, medical care and every day essentials continues to be a struggle for many people across Ohio. Your feedback will help address how we work toward filling those gaps and unmet needs. RCRPC is charged with developing a Regional Coordinated Transportation Plan for Region 5, an 8 county region that includes; Ashland, Crawford, Huron, Knox, Marion, Morrow, Richland and Seneca county. The Regional Coordinated Plan will focus on increasing transportation efficiency, coordination and collaboration from county to county. If you live, work or travel in/to/from any of these counties, use public transportation or work with individuals who use public transportation, we want your feedback! To access this survey, please click the link below. The survey will remain open until April 1. Please share! https://forms.gle/gFYZRZ5Cpx8KD6ct8https://docs.google.com/forms/d/e/1FAIpQLSfst5dVwiWEUf10AwJ8d1W0kfgdunAD67XBMstUy61Oku-hBg/viewform?
Help improve vehicle accessibility! 🚗♿️ If you have a disability, are 18+, and drive or travel in passenger vehicles, take this 15-minute usability survey to help make vehicle interfaces more user-friendly. Send an email to UVIDSurvey@umich.edu to participate! #AccessibleDriving
Ohio Advocacy Heartbeat is still doing research on nutrition access for people with disabilities in Ohio. Please check out link to their survey.
Upcoming Events and Meetings March 10-15th 2025.
Monday March 10th, 2025
Brain Injury Awareness Day at Ohio StateHouse Columbus, Ohio.
Accessibility 2025 Listening Session 6-8pm at Columbus Public Library
Tuesday March 11th, 2025
L.E.A.P. Advocacy Meeting 10am-11am it is at Reed Memorial Library, Jenkins Room – 167 E Main Street, Ravenna contact Ericl@portagedd.org for more information.
Developmental Disabilities Job and Resource Event Fair, Tuesday, Mar 11 · 11 AM–1 PM 6465 Center St Mentor, OH 44060,
Montgomery County Board of Developmental Disabilities Agency Provider Think Tank, Tuesday, Mar 11 · 11 AM–12 PM at 4045 Salem Ave Dayton, OH 45416, USA
Warren County Board of Developmental Disabilities Developmental Disabilities Month Open House, Tuesday, Mar 11 · 1–2 PM. Warren County Board of Developmental Disabilities at 801 Drake Rd, Lebanon, OH 45036.
Warren County Board of Developmental Disabilities Developmental Disabilities Awareness Month Open House, Tuesday, Mar 11 · 6–7 PM at Warren County Board of Developmental Disabilities 801 Drake Rd, Lebanon, OH 45036.
Supported Decision Making Network of Ohio 12-1pmThis is for anyone who is interested in knowing more about supported decision making. https://www.sdmno.org
DODD Family Connection Forum 12:00-1:00pm Family Connection Forum, formerly Family Advisory Council, provides an opportunity for DODD to hear directly from family members and family serving organizations. It also provides the opportunity to educate the community about the department’s current initiatives from executive staff. To register check out link. https://www.zoomgov.com/meeting/register/vJIsdu-hqTojEqbMpbDJVdhha6lAnc-adobe
Thursday March 13th, 2025
OSDA Creative Changemakers 4:30-5:30pm Its a group of peers/self-advocates who meet once a month to hang out and talk about issues facing people with disabilities in Ohio This group supported by the Ohio Self-Determination Association. Change Makers was created by and is run by people with disabilities because they wanted to extend their advocacy conversations beyond the COOL meetings. Please Contact one of the emails listed clareschloemer.osda@gmail.com nrichards@clearwatercog.org osda2011@gmail.com
Move for Life Mobility Fair & Reelabilities Festival 6:00-8:15pm Cuyahoga DD’s Cuyahoga DD Move For Life Mobility Fair and Reel Abilities Film Festival has been rescheduled for Thursday, March 13, 2025, 6-8pm at our Big Creek Center, 6149 W 130th Street, Parma OH 44130. We will follow the same format as planned. 6-7 pm Move for Life Mobility Fair 7-8pm ReelAbilities Film Festival, “Facing the Falls” and post-film discussion Refreshments (pizza, chips, cookies, and water) served. https://www.facebook.com/share/1BLYEP7iS2/?mibextid=wwXIfr
Friday March 14th. 2025
Disability Rights Ohio Budget Series 3pm contact bmaddox@disabilityrightsohio.org for more information.
Today is Rare Disease Day. There are over 300 Million people living with a rare disease.
A rare disease is when a disease affects fewer than 1 in every 2,000 people. 72% of rare diseases are genetic based diseases.
Sometimes healthcare access can be more difficult for people with rare diseases and that’s why it’s important to raise awareness about the variety of conditions out there.
A Lot of people with rare diseases struggle to access the right supports and also often those with rare diseases don’t fit the direct mold of care offered by the different social services programs out there. There needs to more advocacy around person centered care so people with rare diseases can get the best care possible.
It is difficult for some people who also go undiagnosed for a long time. Access to genetic testing is more available in todays times then it was in the last century. Coverage of testing for Medicare and Medicaid is improving but still needs to be additional advocacy to assure that more tests are covered. Genetic Testing is expensive. We are always discovering new genetic conditions and also more research is being done.
There is a lot more advocacy for funding for research and opportunities for people to share their stories.
There are laws been put in place to stop discrimination with healthcare and employment around genetic information like the Genetic Information Non Discrimination Act (GINA) this law basically bans health insurance companies from discriminating against people who have pre existing genetics conditions found thru genetic testing. It also provides additional HIPAA protections for people.
This law really makes sure that people who have genetic conditions are protected against discrimination. To know 72% of rare diseases are genetic it is great that there are protections in place.
On Rare Disease Day it is also important to talk about access to healthcare. Even though there are laws like GINA in place there is also discrimination in healthcare that isn’t always obvious. Sometimes people face challenges in accessing care that don’t get discussed to often.
With the push for one central EHR System this Electronic Health Record, many people are facing discrimination through dealing with misdiagnosis while waiting to get a proper diagnosis so for some their health information is old, outdated and creates challenges to get appropriate treatment because their diagnosis list isn’t updated and old inaccurate diagnosis still exist.
It isn’t easy to ask for amendment or change to a health record. Some people as gas lighted by doctors while seeking treatment for the amount of diagnosis they have or treated like their conditions are mental health related and this leads to people not getting adequate treatment and care.
The EHR system was designed to connect the dots in care and help people see health records from every where to piece together records scattered across multiple health systems.
For some people with Rare Diseases this system is nuisance or a hinderance to get their records corrected without someone else entering in old inaccurate information. For some it helps to connect the dots and some doctors now refuse to take old records forgetting that before the EHR that there are valid health records.
There must be continued advocacy for care coordination and person centered care for people with rare diseases. We need to make it more accessible to amend health records to get inaccurate information removed and the correct information updated.
The ability to have up to date health information at our fingertips is important part of care coordination so if stops medical waste and people from going thru unnecessary procedures or treatment.
Raising awareness about rare diseases also helps doctors understand how people live with the conditions they have and how to improve outcomes for those living with a rare disease.
March is Developmental Disabilities Awareness Month. We wanted to create a post to share about some of the events happening around Ohio this month to raise awareness and celebrate people with Developmental Disabilities.
March 1
Seneca County Board of Developmental Disabilities DD Awareness Month Luncheon at the Seneca County Opportunity Center
Summit County Board of Developmental Disabilities is asking people to wear Orange for Inclusion Day. To find out more about what they are doing check out this link
March 4th
Driving Towards Access Ohio DD Day at the Ohio Statehouse In Columbus, Ohio.
Marion County Board of Developmental Disabilities is doing an Inclusion Day called This is Me: More than DD. They are asking people to wear Orange and share stories. Check out more at this link
March 5th
DD Awareness Month Proclamation Month Signing 10-11am with Tuscarawas County Board of Developmental Disabilities at Courthouse at 25 E High Ave New Philadelphia, OH 44663, USA
March 7th
Jackson County Board of Developmental Disabilities is holding a DD Awareness Month event from 10-2pm in Jackson, Ohio.
Athens County Board of Developmental Disabilities is holding a March on Court Street for Developmental Disabilities Event at 10am this is link to the flyer for more information.
Ross County Board of Developmental Disabilities is holding a DD Awareness Month Walk at 10am check out this link for more information.
Brain Injury Awareness Advocacy Day at the Ohio Statehouse.
March 11th
Warren County Board of Developmental Disabilities Services will be hosting an Open House for the community for Developmental Disabilities Awareness Month
The annual Open House event aims to showcase the many achievements of people served by WCBDD, as well as inform the community about the services and supports WCBDD provides to individuals with disabilities. Open House will be hosted on March 11, 2025, at the Warren C. Young Center, located at 801 Drake Road in Lebanon. The first session will take place at 1 p.m., and the second session will begin at 6pm for more information check out this link to find out more.
March 14th
The Celebrity Basketball game is on March 14 at 7 p.m. at Heidelberg University’s Seiberling Gymnasium. Teams of community members and Seneca Arrows Special Olympics athletes will take to the court for this annual tradition. The event is open to the public for anyone to come and cheer them on.
March 21st
Rock Your Socks for World Down Syndrome Day! Show your socks on social media.
March 27th
Portage County Board of Developmental Disabilities is hosting a DD Awareness Rally in Ravenna, Ohio.
Athens County Board of Developmental Disabilities Awareness Festival 6-8pm in Athens, Ohio. This is a flyer about the event to read more.
In some counties they are doing a month long celebration of Developmental Disabilities Awareness Month.
In Butler County, their website has this cool way to share how you raise awareness.
DD Awareness Wear Orange Campaign
Taking photo entries until Monday, March 31
Developmental Disability (DD) Awareness Month is a nationwide movement that raises awareness about inclusion of people with developmental disabilities in all aspects of community life, and the barriers that people with disabilities still face. Although DD Awareness Month doesn’t begin until March, we thought why not start celebrating now with the “Wear Orange” social media campaign! Orange is the national color for DD Awareness month because it symbolizes both energy and positivity. From now until Monday, March 31 we will be accepting photos of those in the community who are wearing orange in support of DD Awareness Month! To participate in this campaign, please send a photo or photos of you and/or individuals you support in the DD community with the name of those in the photo/s and why DD Awareness Month is important to Cassie Mattia at cqmattia@butlerdd.org .
Hosts Brad Lomax: The Disabled Black Panther Who Fought for Section 504
Date & Time Feb 28, 2025 03:00 PM in Black History Month, come learn about Brad Lomax, a member of the disability community and the Black Panther Party, who showed that communities share similar obstacles and a need for change.
People First is a self advocacy group for Adults with IDD (Intellectual and Developmental Disabilities) in NE Ohio. They care about having our voices heard, empowering one another, nothing about us without us, Education, Equality and Inclusion. They meet virtually. For more information contact amy.mordaunt@thearcofohio.org
Thursday February 20th
Statewide Independent Living Council meets in Columbus, Ohio from 2-4pm
For more information and the meeting agenda please check out this website.
Friday February 21st
Disability Rights Ohio Budget Debrief at 3pm. contact
The Pulse: What’s happening in Ohio February 10th, 2025 to February 15th 2025?
Important Sign Ups and Events to Register for…
People First of Ohio is taking sign ups for some online advocacy trainings
https://us06web.zoom.us/meeting/register/V7Pwt9CSTy-duMKb5P4FXQ Register now for People First of Ohio’s online training! Each month, we’ll cover a wide variety of topics such as Technology, Voting Rights, Supported Decision Making, Connecting with State/National Policy Makers, Plain Language, Choosing a Provider & more.
Feb. 12, 2pm: History of Disability Rights/Key Legislation (then and now) with Gary Tonks from The Arc of Ohio and People First Advocates
Feb. 26, 2pm: Building a Strong Self Advocacy Group with Kraig Walker & Michael Richards from People First of OH.
Register once to join us for our entire series on Zoom.
Recordings will be available later on People First’s website & YouTube channel for your chapter to discuss these topics in a group setting – or to watch at home!
-Assisted Technology Learning Lab Hands-On Assistive Technology for Employability Skills and Transition
Open House, Tuesday, Feb 11 · 11 AM–1 PM at Morrow County Board of Developmental Disabilities.
-Supported Decision Making Network of Ohio Monthly Meeting. 12-2pm on zoom.
This is for anyone who is interested in knowing more about supported decision making. https://www.sdmno.org
-Sharing Solutions ID/DD Educational Support Group for Families Caregivers and Professionals, Tuesday, Feb 11 · 5–7 PM at 430 Applegrove St NW North Canton, OH 44720, USA. They are hosting Gary Tonks from the Arc of Ohio as one of the speakers.
Thursday February 13th
-OSDA Changemakers Virtual Group 4:30pm
It is a group of self advocates who discuss important disability rights issues. This is the zoom link to join.
-Ohio Developmental Disabilities Council Meeting in Columbus, Ohio.
Friday February 14th
-Disability Rights Ohio Budget Debrief at 3pm to 4pm please contact bmaddox@disabilityrightsohio.org for information on how to join this meeting.
-Ohio Developmental Disabilities Council Meeting in Columbus, Ohio.
Every week Ohio Advocacy Heartbeat puts out a weekly what’s happening in Ohio and also we share one or two National Events to look forward to.
Upcoming Events for the week of February 3rd, 2025 to February 8th, 2025. You can a calendar of events on our main website OhioAdvocacyHeartbeat.com
At the current moment there is a sign up for Ohio Developmental Disabilities Day at the statehouse and you can find it by clicking this link. Ohio DD Day is set for March 4th 2025 at the Ohio Statehouse Registration is required in advance for everyone including caregivers.
Monday February 3rd, 2025
No Known Events
Tuesday February 4th, 2025
Wednesday February 5th, 2025
Ohio Self Determination Association at We Thrive Together at 11 am
Every week Ohio Advocacy Heartbeat puts out a weekly what’s happening in Ohio and also we share one or two National Events to look forward to.
Upcoming Events for the week of January 27th to February 1st 2025. You can a calendar of events on our main website OhioAdvocacyHeartbeat.com
At the current moment there is a sign up for Ohio Developmental Disabilities Day at the statehouse and you can find it by clicking this link. Ohio DD Day is set for March 4th 2025 at the Ohio Statehouse Registration is required in advance for everyone including caregivers.
Monday January 27th 2025
Building an Inclusive 988 from 2-3pm register through this link
Tuesday January 28th, 2025
Southwest Ohio Advocacy Group Meets in Cincinnati, Ohio. 6-8pm at 4623 Wesley Avenue Cincinnati, OH 45212, USA
Wednesday January 29th, 2025
Human Trafficking Prevention Advocacy Day at the Ohio Statehouse in Columbus, Ohio.
Pickaway County Provider Round Table 4-5pm at 200 E High Street Circleville, OH 43113, USA
Pickaway County is hosting a provider round table the topic is Compassion Fatigue. It is both in person and virtual. For questions or to receive the zoom link please contact aknotts@pickawaydd.org
For 200 years, braille is been a both a fixture and a mainstay in blind people's lives. It helps achieve independence, employment, and overall improves quality of life. There's a lot of uses for braille, including labeling things, reading religious materials, the list goes on. In honor of Braille Litwitheracy Month, I decided to write about how I use braille. Sometimes, when someone mentions or suggests learning braille whether it's for someone who was born blind, or someone who became blind or visually impaired later in life, a common question is: "What would I use it for?" Typically, when ever I get asked this, I always respond with some form of: "Well, what are some things you like to do, or liked to do before you lost your sight?" and listen to people's responses. Depending on what their answers are, I try and take some of their answers and tell them how braille applies to them. For instance, if someone tells me they love reading, then, I will tell them about how braille will open your world up, because you'll be able to read books in whatever genre you like, or, even read magazines and newspapers, and, I talk about various resources such as the NLS. (National Library Service For The Blind And Print Disabled.) I also talk about ways to read, such as getting harcopy braille books, or, even reading on a refreshable braille display. I know that every one's use case, situation, circumstances, etc will be different. However, I wanted to give some ideas. But, first, I want to share my braille journey with you all.
I have been blind since birth, due to underdeveloped optic nerves. I started learning braille when I was 6 months old, and, I'm 27 now. So, I've been reading and using braille for about 26 years give or take. When she found out I was blind, Mom had no help. That meant that she had to figure things out on her own, and find resources on her own. She taught herself braille, so that she could teach me. When the braille code changed from English Braille American Edition or, as we call it, old braille, to Unified English Braille or new braille as we call it, in 2016, I had to start from scratch. There have been periods in my life where I have had no access to braille, such as when my equipment needed repairs, or, when my BrailleNote was taken from me in 2016 2 weeks before graduating high school. I now have a refreshable braille display, and, I'm very happy to say, I'm reading and writing in the new braille code! I will also say that my refreshable braille display is a big cornerstone in my life. It gives me the ability to do many things that I otherwise either would not be able to do, or, that I wouldn't be able to do as well and effectively as I can do them now. With that in mind, here are some ways that I use braille, and incoporate it into my daily life.
1. Navigation using braille plates and signage Under the Americans with Disabilities Act, public place are required to have braille plates and signage, including in the elevators. When I was in school, I often used the braille plates by each classroom to navigate. For example, if I needed to find my science class, I knew the room number was 208. So, I'd take my route, and, double-check to make sure I was at the right room! It also helps in the elevators. If I'm on another floor, and, I need to go to the lobby, I get in the elevator and look for the button that has a braille and tactile marker for the lobby, and press it!
2. Cooking
I love microwave meals for a variety of reasons. However, since microwaves are touchscreens, I'd need help finding the buttons to press, or I'd have to have someone heat up my meal for me. However, my microwave has braille labels on it for the number pad, the start and stop buttons, etc, which means that all I have to do is have someone read me the directions on the package for the meal.
Sadly, due to how the devices are being made now, such as having buttons on a touchscreen that are very close together, it's getting harder for these types of appliances to be brailled.
There are also braille measuring cups and spoons that you can buy to help with cooking as well. They're plastic, and the braille is molded into it, which means no danger of labels popping off when being washed! You can get them from various adaptive equipment companies such as MaxiAids.
As a bonus, if you have thermaform paper, you can write down recipes in braille! I recommend using this type of paper, because if you get stuff on it, you can just wipe it off. Whereas with regular braille paper, it can become damaged, and make the information hard if not impossible to read.
3. Financial Management
You can get your bank statements in braille! This allows for greater financial independence, because you'll be able to keep track of your bank balance, transations and deposits etc. If you're not sure if your bank provides this, you can call them, or go to their website. For instance, if you do business with Huntington Bank, you can either call, go into a branch, or, fill out a form online to obtain your braille statements. Also, check and see if you can get your bills in braille as well!
4. Keeping up with the news
I like to stay in the loop about events going on in my community, in Ohio, nationally, as well as internationally, plus, news surrounding advocacy and disability rights issues. If I want to read a national newspaper, or an Ohio newspaper such as the Dayton Daily News, I use a service called NFBNewsline, which is a free service available to people who are blind, or have other print disabilities. I can get any newspapers and magazines that they offer on my braille display. I can also navigate through the publication, and skip articles and sections that aren't of interest to me. I can also look at social media such as Facebook to see what's going on in the disability and advocacy communities. I just pair my Iphone and Ipad with my braille display with bluetooth, and, I'm ready to go!
5. Reading books... otherwise known as keeping my sanity
Reading has been my main coping mechanism for years. I like all kinds of genres, however, my favorite genres are mystery, thriller, or suspense. I can go to Bookshare, a subscription-based service for people with print disabilities, or the Braille And Audio Reading Download or BARD. web site from the NLS. and browse the books they offer, or search for a book or author I want to read. If it's available on any of those services, I can download it directly to my braille display. From there, I can read it anywhere at any time! This saves on space and expense. Braille books are sometimes broken down into volumes because it's thicker than print. One print page is 3 braille pages. This means that space is at a premium. This also saves money, because, braille books can be expensive, especially if you read books like the Alex Cross series by James Patterson.
5. Communicating
I can write, read, receive and send things such as text messages or emails using braille. I just use my braille display which is paired to my IOS. device through bluetooth. So, if someone asks me if I need anything from the store, I can read the text, and reply back with my answer, all while using braille. It makes typing much faster, and much more accurate than using an onscreen keyboard, or dictation.
6. Learning and Education
When I was in scholl, my textbooks, assignments and so on were in braille. Nowadays, when I'm in a training, I will still have my materials in braille on my refreshable braille display. It helps me follow along with what's being taught, and, I can comprehend it better. It also allows me to do any worksheets that are associated with whatever workshop or training I attend. As a bonus, if it's provided ahead of time, I can look at a presentation that's being screenshared in a meeting. This is crucial for me because, as a screenreader user, visual content that is being screenshared is not accessible to me, due to the fact that it's essentially a video. The only way I get annthing out of screenshares, is if there's an audio component, or if people describe things in detail, or, if I can read the presentations. If I have the presentation they're reading, then I can follow along, and participate more in the discussion.
7. Notetaking and other secretarial work
For those who don't know, I'm a member of the National Federation of The Blind Ohio Greater Akron Chapter, and the NFB. Ohio Community Service Devision. I recently became the secretary for the devision. Which means I take notes in the meetings, and write out the minutes, and keep track of the member list. Braille is crucial to me being able to do this. With braille, I can be in the meeting, and writing in my shorthand, and then when I'm working on the minutes, I can look at my notes, and, type up the minutes that way. I can do all of this directly on my braille display. While recording meetings is essential, having notes you take down is another crucial component. I can even read the minutes on the braille display at the meeting.
8. Advocacy
As a disability rights advocate in Ohio, I do a lot, and wear many hats. I attend meetings, write letters, and, yes, I even write these blog posts using braille, for example. Writing and reading are big parts of advocacy. Whether it's writing an email asking for reasonable accommodations, or submitting written testimony, or reading changes to a rule, or any of the other laundry list of tasks we do as advocates, and, it helps me out a great deal with all of these things, and many others. I firmly believe that if I didn't have braille in my life, I either wouldn't be able to do all the things I do, or do them nearly as well or efficiently. More than likely, I'd have to make the difficult decision to step down from some of my roles and positions.
9. Organization and labeling
I also use braille to organize things. For instance, I have an extensive CD. collection. My albums are labeled so that I know what they are. This is especially helpful when I have multiple albums from the same artist. You can use braille to organize in other ways as well. For example, you can label spice containers, or put a braille label on a magnet, and stick it to a canned food item.
10. Recording content for radio programs
I recently started volunteering and recording content for radio programs for Goodwill Youngstown Radio Reading Service. I have a list of books that I'd like to record. I recently recorded a set of books to honor Dr. Seuss's birthday. I downloaded the books to my braille display, and read them, and recorded them using my Ipad. I can go to NLS. BARD. and Bookshare to get books to read. I could also read magazines from NFBNewsline, or BARD.
11. You can draw with your perkins brailler
Yes, you read that right! You can draw with your perkins braillewriter! There's a book on Amazon by Kim Charlson called Drawing with your perkins brailler. There's also drawings online that you can find. Kim Charlson's books has several drawings in it, including a christmas tree, and shapes such as a triangle.
This is by no means an extensive list of use cases for braille. However, I hope that I've given you some ideas on how to incorporate braille into your daily life. I'd love to hear how you use braille, and about your braille journey. Feel free to post a comment and share your thoughts!
The Link Center is hosting a series of virtual Shared Learning Groups for DSPs, clinical professionals, family members, and individuals with lived experience. This session will focus on preventing justice system involvement for individuals with IDD and co-occurring mental health needs. Participants will explore critical touchpoints within the justice system where support can make a difference, ensuring individuals receive the resources and understanding they need. The session will also highlight strategies for successful reintegration into society by connecting individuals with community resources and support networks.
Direct Support Professionals: January 21, 2025, 1:00-2:30 p.m. ET
Clinical Professionals: January 21, 2025, 3:00-4:30 p.m. ET
The Link Center is hosting a series of virtual Shared Learning Groups for DSPs, clinical professionals, family members, and individuals with lived experience. This session will focus on preventing justice system involvement for individuals with IDD and co-occurring mental health needs. Participants will explore critical touchpoints within the justice system where support can make a difference, ensuring individuals receive the resources and understanding they need. The session will also highlight strategies for successful reintegration into society by connecting individuals with community resources and support networks.
Here are some events coming up in next few months that require advanced registration.
At the current moment there is a sign up for Ohio Developmental Disabilities Day at the statehouse and you can find it by clicking this link. Ohio DD Day is set for March 4th 2025 at the Ohio Statehouse Registration is required in advance for everyone including caregivers.
The Brain Injury Association of Ohio is hosting Brain Injury Advocacy Day at the Statehouse is March 10th. There is advanced registration required and two virtual training sessions. For more information please check out this link or contact them through their Facebook page.
To add your event to our calendar please fill out this form and we will add your event.
Technology is great! It gives us the ability to be independent, get help when and if we need it, and get and retain employment, and so many more things! When it works, the keyword being when. We've all been there, you're going about your day, doing some holiday shopping, checking Facebook, or doing whatever you needed to do and... your device starts acting wonky. Or, you have been using it, and things have been going wonderfully. Until that is, you have to update your software. What do you do? Some people may look on YouTube, or any other site, talk to friends and/or family, and maybe try some basic troubleshooting steps, such as turning it off and back on again. Most of the time, these solutions either work, or give you a workaround until the issue is fixed for instance. But, sometimes, no matter how hard you try, or what troubleshooting steps you take, the issue persists. So, then the next logical step is to reach out to tech support.
For people without disabilities, this is pretty straightforward. You call, tell the agent what issue you're having, on which device it's occurring on, and whatever troubleshooting steps you've taken. For people with disabilities, the process can get complicated, for a number of reasons. We use assistive tech such as screenreaders, which makes our devices work differently than a non-disabled person's. That means that while we use our devices to do the same things as the rest of society, we have to do things differently. Or, we may use a piece of assistive technology such as a braille display which connects to our devices. To add to that, we may use our devices for things such as reading documents aloud with OCR. To add to the complexity, if someone has a cognitive or intelectual disability, or learning disability, etc, understanding what the agent is telling you to do can be challenging. For these reasons, we rely on accessibility support phone numbers and channels, that have agents that are trained to work with accessibility features and people with disabilities. Sometimes, these agents use assistive tech outside of work as well. I recently had an issue that is still ongoing, that required me to reach out to tech support for Apple and Google. This is my reveiw of my experience calling Google Accessibility. I've also put in some recommendations on how accessibility support lines could be improved, as well as my recommendation for the best way to get ahold of Google Disability Support, along with the ways you can reach out. To give a little background, I'm completely blind, and use the Voiceover screenreader, on my Iphone and Ipad. I also use email quite a bit, and have a Gmail address, linked to my Apple Mail app. This issue started when I updated to 18.2 on both devices. Apple recently released a feature that sorts your email into categories, such as transactions, priority, etc as well. However, there's only support for this feature on the Iphone, not the Ipad. Before updating, everything was going wonderfully. The issue started when I had to schedule an email to be sent out at 9 PM. on Wednesday night. I had set it up like I usually did, and figured I'd download the update, and the email could and would be sent out while that was happening. I found out later on, that the email was never received. However, it was not in the send later box as it normally would be nor was it in the outbox, which would've indicated that the message didn't go through. Then, I looked at the rest of my emails. My inbox was ok on my Ipad, however, I found out to my horror, and shock, my VIP. mailbox, and my flagged mailbox were missing a very significant number of messages. The messages were on my phone, in the right places, but, the inbox was not right on my phone. I was still getting emails, and, I don't know what happened. I did some basic trouleshooting steps, of refreshing the Mail app, checking available storage, etc, with no luck, and everything looking good. So, I called tech support. After spending a few hours on the phone with Apple, we deleted the account on my Ipad, and put it back on. For a while, it seemed to be rebuilding itself quite well. However, it got stuck at some point, and my VIP. and flagged mailboxes soon became stagnant. I called back the next morning, gave the Apple advisor the case number associated with this issue, and explained what was going on, and, what we'd done to try and remedy the situation. After looking at the case file, I was sent to Google. This is where things really started heading downhill and getting more stressful, and frustrating.
To start out, there are 3 ways you can get ahold of an accessibility support representative at Google. You can either reach out to Google through the Specialized Help section of the Be My Eyes App available on Windows, IOS. and Android, call a toll-free number, or fill out a form, and have an agent call you. I have used the form method with great success. However, due to the nature and complexity of the issue, I decided to just call the number. I also had the Apple Accessibility agent on the phone in case there were questions because my Gmail account is linked to my Apple Mail app.
When I called, I was given the standard prompts that you normally hear in this type of situation. That you were calling the accessibility support line, and who the line was for, and, told to visit the web site, for more help, or if I wasn't an accessiaility customer. After that, I was given a list of options to pick from, such as account recovery and access issues, issues with Android, etc, with each option having a different number associated with it. I chose my option, and was put on hold until an agent was able to take my call. It didn't take long, before an agent picked the phone. I gave my personal and account information, and, told him I used VoiceOver on an Ipad, stating I was visually impaired, and, explained my issue. The agent went on by telling me what he thinks caused it, which was my email was going to my Spam. Before I go any further, I wayt to say that I have pretty good tech knowledge, and that everything worked good until after the update. Plus, emails from these lists and people weren't going there before. But, I understand he had a script and steps to follow. So, I asked how to get to it on the Gmail website. He said to click on the 3 underlines. I asked what that was labeled as. When you have an icon, button, etc, it has to be labeled a certain way so that a screenreader can detect it, and tell you what it is. So, for instance, if you have a settings icon that looks like a hamburger, you would want to label it settings. If you have a button that allowed you to say forward an email, you would want to label it forward, and then screenreaders will say, "Forward button," This is why it's crucial to have elements such as links, buttons, checkboxes, etc, labeled, because without that, whatever element we have will just say for instance "Link," or, "Button," which doesn't give us much.
I explained politely to the agent that I was visually impaired, so, when he said things like the three underlines or 3 dots, it meant nothing to me. After trying different things, he put me on hold. I also had the Apple agent on the phone since my Gmail account was hooked up to the Apple Mail App. After a while, the agent came back on the phone, but, the Apple agent said she heard static and had to put me on hold. After waiting for a while, and not being able to hear the Google agent, and being frustrated, I ended the call.
Fast-forward to later that day, and, I receive an email from another Google Disability Support agent, with suggestions. The suggestions didn't fit the problem I was and am having. I'm going to be getting someone else to help me hopefully solve this issue, and I hope that it can eventually get solved. Because this is an issue that has disrupted my workflow, along with other issues. I'm very disappointed with the experience calling Google Accessibiility, especially because I have had wonderful experiences whenever I've filled out the form and had an agent call me. The fact that there's that much of a gap in quality between experiences is concerning to me. Don't get me wrong, I'm glad that we have this option. I'm also glad that more companies are offering accessibility support for customers. However, I think there's a lot that could be done to impove things.
1. Agents should get extensive training not only on assistive technology, such as braille displays, but also, accessibility features on devices, such as voiceover on an Ipad. 2. Agents should be trained on how to interact with and/or work with people with disabilities, and learn about different ways they may identify themselves. While I could've worded my sentence more clearly by saying I was completely blind, so people may say they have a visual impairment, for instance. 3. This is one of the most important things for me. Companies that have accessibility support lines, should hire people that have lived experience, and use this technology outside of work as well in their every day lives. If a person helps their family member with this stuff, that's also a plus. This is especially important when it comes to working with products such as braille displays hooked up to devices. I've had several instances calling an accessibility support line, due to issues with my braille display and connected devices such as my Ipad, and, I've had to walk the agent through things painstakingly, because sometimes things have had to be escalated to the engineering department. I've even had one agent tell me that their engineering department suggest that I take a picture of my braille display and submit it through their system. I must admit, I had not heard that one before, and was pretty shocked when I heard that one, and, I had to ask the agent to repeat themselves! I've had various agents tell me that they don't receive hardly any if any training on braille displays. 4. Screensharing can be a blessing! There's a company that I call, and whenever I have an issue, if the agent doesn't say anything about screensharing, I request it. With the software that's used, the agent can only see the screen. They can't control it, and, if I have to enter anything sensitive such as banking info, either the software pauses automatically, or the agent pauses it. You can also request that the agent pause the session at any time. Before this, something that would normally take 10 minutes to solve, would take 20 minutes or longer. Because I had to explain what app I was in, where I was on the screen, along with every detail that I could. More companies should adopt screensharing practices and software for their agents to use. It will save time, and frustration, among other things for both the customer and the agent. If the customer is using a 3rd party device such as an Ipad to access a company's software, then there should be a way for screensharing to still take place. This should be easy, user-friendly, and free for customers and agents. Agents should also be able to walk a customer through installing and getting it up and running. Right now, say if I have to Amazon about my echo, and I have to go into the app on my Ipad, the agent cannot see my screen. I have to tell them what's on it, and break it down into chunks, as well as telling the agent what Voiceover is saying. Sometimes, the agent has to resort to using their phone at work to figure it out.
If you have to reach out to Google Support, I recommend filling out the form and having an agent call you. I've had to do that twice, and, have had great success that way.
To get in touch with Google Support, you can go to:
Google Disability Support is available from 7 AM. Eastern Time to 9 PM. Eastern time Monday through Friday. U.S. customers can also call toll-free: +650-417-9257
You can also reach out to them through the Specialized Help Section on the Be My Eyes App, which is available on IOS. Android, and Windows.
Advocacy. It’s a word you hear a lot, and, it’s something you do a lot more than you realize. Whether you’re disabled or not, you advocate every day. Whether you are a person with low vision who asks for a document in larger font, or, a single parent asking for a different shift, so that you can take your kiddo to school the pick them up. Or trying to get a law changed or passed in your state, city, county or township, or even in the country, or giving testimony, you’re advocacting.
This is what I do every single day. Whether I’m asking for braille menus, or an accessible document, or trying to get rules or laws changed.
My name is Dawn Bilpuch, and, I’m a disability rights advocate, and a person with a disability. I have been blind since birth. This is an introduction to a multi-part series that I’m going to be writing about and for advocacy and advocates. This series will cover:
What advocacy means, what it means to me, and what it means to you
What advocates wish people knew and understood
What can be done to support advocates
Why I Chose To Do This
I have several reasons that motivated me work on this. The first reason, the original firestarter, came in December 2023. A friend of mine whose a fellow advocate, was being abused, and, was denied aid in a medical crisis, and, I had to bet the aides to give her water and oxygen. I ⊦ to save her life, because if I hadn’t been there, she may not be here today. That triggered some past trauma involving a family member’s medical emergency, and as a result, I deteriorated mentally and emotionally’like . It caused a serious if not severe mental breakdown. As a result, my work performance was effected. While I’m in a somewhat better place now, in some ways I’m still recovering. Regardless of how I felt and how it affected me, I’m glad I was there, and would do it all over again.
Then, earlier in 2024, I was (and still am) secretary for an ad?ocacy group in Ohio, a friend of mine and fellow colleague who was chair, was pushed out, and I experienced mistreatment, and, I began to think about it again. Fast forw4 to now, and, the person who took the chair position abruptly resigned, before a big event, and, I had to step away to take care of my mental health for 2 months. The response I got was not what I expected. Plus, a bill that I support called Lauren’s Law was introduced, and, that made the climate colder than what it already was. It’s left me with a lot of feelings of hurt, exhaustion, shame, to name a few, and, I have also been dealing with self-blame and self-doubt. So, I feel that one of the ways I can work through this is to write this series. This is an unflinching, uncensored account of and look at advocacy, and, what it means to be an advocate.
There’s many reasons why I’m beyond proud to be an american. While we do have our problems, we are also blessed with great opportunities and rights that people in a lot of other countries can only dare to dream of having. We can speak freely and openly about policies that affect us, without fear of retaliation or retribution, we can say whether we like or dislike anyone in a political office, without those same fears, and, we can vote. We can choose who we put in office at the local, state, and federal levels of government. For minorities, such as women and people with disabilities, this was not always the case. Women in America were able to vote in 1920. For people with disabilities, their rights were not cemented until 2002, when the Help America Vote Act or HAVA. was passed. One of the things that this bill mandated was that voting be made accessible for people with disabilities. It also required that there be at least one accessible voting machine in every polling place. Or, pollworkers needed to help people with disabilities.
This law was advocated for after the presidential election in 2000, with Florida being one of the states in the middle of it. During that election, people with disabilities faced many challenges, including having to go to different polling places because their polling place either didn’t have accessible machines, or the machine was not working, or they had to vote using the paper ballot and poke holes in the chads. Various disability advocacy organizations including the NFB. fought for reform. Thankfully, although there are still issues, we have moved past those days. I want to take the time to share my voting experience and some tips that I have that have worked for me, when I’ve voted in the past, as well as some resources that others may find helpful. I realize that every county in Ohio runs their elections differently, and, I know that everyone’s voting experience will be different. With that in mind, I’m also curious to hear other disabled voters experiences, whether they’ve voted in person, done early voting or done absentee voting, as well as any tips that you think others will find helpful. I for one would rather vote in person, because I can do it independently, and, I don’t have to rely on anyone for help filling out my ballot, which is very important to me. I just need someone to drive me to and from the polls, help me fill out the paperwork when I go in to cast my ballot, and get me to where the accessible voting machine is set up, find the headphones, and, get me to the scanner when my ballot prints out
It is not my intent to make this entry political in any way, shape or form. Nor am I trying to shame anyone for having a certain viewpoint or opinion. The fact that we have differing opinions, beliefs, etc is one of the things that makes this country such a great place to live! All I’m trying to do is share my voting experiences, and, some tips that I have used, and found helpful.
To preface this, I want to say that I live in a small rurral county, and, have had a great experience when going in and casting my ballot. However, I have heard of larger counties not doing as great a job as smaller counties. Why this is the case is a mystery to me, but, I’d be interested in hearing others opinions and insights regarding this as well. I’d also be interested in hearing what was done to remedy the situation, or if it was even resolved at all.
1. Take advantage of early voting
We do this when voting for a number of reasons. First off, there’s no line all the times we went in there. This could be useful for people who can’t stand for long periods of time for example. The reason I like it is that I can take my time voting. I use the accessible voting machine, so, I have to listen to the ballot being read to me and then go through the options until I find the desired one, and select it. It usually takes about an hour. I remember when we had a voting machine that used a numeric keypad, and you had to place it on a magnet. That took a little longer to do. But, when I go in early, it’s quiet, and I don’t feel rushed and can take my time. The other main reason we do it, is that we go to the Board Of Elections Office. I’ll get into more detail in tip 2 on why I recommend this. However, they are only open for voting during the early voting period.
2. Go to your board of elections to cast your vote
This is very important for several reasons. For one, I know there will be an accessible voting machine there. Plus, in my experience, the workers are trained on how to set it up so that I can get the audio. I usually will either ask, “Can I have the audio please? Thank you so much!” or, politely remind them that I need the audio. I do something similar to this in other areas of my life. One of the other reasons I go here to do early voting, is because if and when tech gremlins decide to invade and wreak havoc, there’s a tech on sight that can do their magic, and get rid of the tech gremlins. I can remember a couple instances, where we had to call them over. Plus, in my county, every year they change our polling place, which is quite annoying! Also, as I’ve stated before, there’s no rush, and, in my experience, there’s never been a line.
3. If your county has changed voting machines, go and see how they work if possible.
I went through this at my county. After the previous presidential election, my county changed voting machines. The ones we had were a numeric keypad, and you had to remember which key did what. For example the 4 and 6 keys moved you between the candidates, and, the 5 key was your select button. You had to put the machine on this magnet, and, it was very finicky. If it was not on the magnet just right, it would not work! I can recall one instance where we had to have the tech that was on sight come over and help. We did get it to work, and I was able to cast my ballot without further issues.
A few years ago, my county purchased newer voting machines. There was news coverage in my area about this, and, they said the machines would be ADA. compliant. They also said they’d be holding a mock election to test the machines out, and, invited people to come check them out, and learn how the new machines worked. Fearing that there’d be issues with accessibility, I went to the mock election. There, the workers were very helpful, and they even had the on sight tech help me and explain to me how the machine worked. I still remember feeling the machine and the buttons, and realizing that there was braille on it. I remember being so excited that I said, “Yay! There’s braille on this!” and the tech was chuckling and saying “I guess you love the braille.”
Not only did the machine have braille on it telling you what the buttons were, but, the buttons were shaped differently! I cast my vote, and, sent it to the printer, and, to my surprise, I had my own printer! Before, I had to send it to the same printer that everyone else’s ballots were printed, so, I had to have someone help me to the printer, and the scanner. Nowadays, I only need help getting to the scanner, where I put my ballot in, and it gets dropped into a bookbag-style bag. The workers at my elections office were nice, thorough, patient, and knowledgeable, and answered my questions.
My advice to anyone, is to attend the mock elections if your county gets or is getting new voting machines. It helps spot problems beforehand, and, will allow for time to resolve them before an actual election.
When I used the machine, they actually took down the little window in their area, because they were curious to see how it would work. Which, I didn’t mind at all.
It’s a good idea to know where your Board Of Elections office is, and their contact information.
4. Have someone go with you that you trust, if possible.
When I go to vote, I have a family member go with me. It works out, because, we live in the same house, so, when I get situated at the voting machine, she would go and cast her ballot. Then, when I was done, and our ballots were printed out, we’d go to the scanner and deposit our ballots there. Plus, they help fill out the form that you have to fill out when you vote, and date it. My board of elections is ok with this, since I sign it. When I registered, they were ok with my family member filling out the form, and dating it, as long I signed it, which, I did. I’d also suggest if you can, take someone else that you trust along with you and who ever you go with, so that if the person you usually go with can’t do it, for whatever reason, you have a backup. I also realize that this is not always possible, and if you ever need to, you can have a pollworker help you. You’re supposed to have 2 pollworkers help you, one from each political party.
5. Know what’s on your ballot.
In my experience, I’ve had to have someone read the ballot and type up what the issues and candidates are, because the sample ballot is in PDF. format, and inaccessible. Therefore, I couldn’t read it, using VoiceOver, which is the screenreader that I use, and couldn’t read it on my braille display.
However, I recently heard about an app that’s free, called Ohio Voter Info. It is available on the Apple App Store, and Google Play.
When you install the app, you put in your name, and select the county from the spinner to set it up. From there, you can find your polling place, and, your sample ballot. To do this, find and activate the view sample ballot button. From there, you can choose from a list of sample ballots. Once you have the one you want, you will also find a button that lets you view an accessible ballot. Keep in mind that the ballot for this election may or may not be up yet. However, I was able to view the ballot from the primary election. If your county is not listed, you can contact your County Board of elections office and request that they have their information be added to the app. You can even choose what party ballot you want as well as your municipality. This app does work with VoiceOver, but, there are some unlabeled buttons, and, getting it to work can be a little finicky, but, it is doable.
This applies whether you’re a disabled voter or not. It’s always good to do research on all candidates and issues. When I go to vote, it’s a several day process. Because I dive deep into researching the candidates, and issues. I will use everything from non-partisan sites such as On The Issues, which talks about some candidates stand on a wide variety of issues such as crime, and foreign policy. I will also sometimes use Ballotpedia for biographies on candidates, however, I’ll sometimes go to their social media (mainly Facebook) pages. I also sometimes look at newspaper articles, depending on the content. Also, I let past experience speak for itself too.
I also listen to any debates or interviews that I can. I’d also try and see if you can find audio interviews on The Sound Of Ideas, which is an NPR. program. You can go to:
One time, during mid-term elections, I found interviews of candidates that were running for state office in my district, and listened to them.
Also, another thing that might be helpful especially for the local issues and candidates, is if there’s a Meet The Candidates Night being broadcasted. There’s 2 local radio stations that cover my area. The city I live in has a local radio station, and there’s also a radio station that covers my county. Meet the candidates nights have been broadcasted on both of those in the past, and, I’ll listen to them. During those programs, the facilitators/moderators will ask questions and give each candidate a set time limit to respond. Sometimes, the candidates responses to the questions, and how they are, and if they show up, have factored into my decision.
Here’s an example of what I type into Google when doing research on a candidate:
John Smith Ballotpedi
Or, let’s say that I want to know John Smith’s stance on an issue, here’s what I would type into Google:
John Smith crime OnTheIssues
You can also put:
ontheissues.org
7. If you don’t know what an issue is, or candidate, skip it.
I say this because, the first time I voted, my ballot had the candidates that it was supposed to have. However, the issues that came up were for another municipality. So, I skipped them. It has not happened since then.
8. Know your rights as a disabled voter.
This applies to any and all systems and agencies. If you don’t know your rights, the system will chew you up and spit you out. This will come in handy, especially if you have issues on Election Day, or during early voting. Although I will say, that I cannot say enough good things about my county board of elections.
So don’t be afraid to go and cast your ballot, and put your 2¢ worth in!
RESOURCES
Here are some resources that may be of help.
1. Disability Rights Ohio will have a voter hotline open on Election Day to resolve issues and answer questions. You can call:
(800) 282-9181
2. The National Federation Of The Blind has put together some voter resources at:
3. Here is a page from the Ohio Secretary Of State that’s devoted to voters with disabilities. You will also find links for other things, including special circumstances.
4. If you have the app Be My Eyes, available for IOS. Android, and Windows, there is a section called Specialized Help. In this section, are various companies and organizations that you can call and get help with their products or services.
October is a big deal in and out of the blind community. Fall is in full swing, the school year is in full swing, and Halloween is on Oct. 31st. Several causes, and various disabilities are in the spotlight this month, including Dysautomonia, and, Blind Equality Achievement, along with Disability Employment. In the blindness community, some National Federation Of The Blind affilliates, especially the Ohio affffilliate, are getting ready for their state conventions next month. The blind community is also celebrating Blind Equality Achievement Month or B.E.A.M.
Blind Equality Achievement Month means many different things to many different people, and, every blind or low-vision person celebrates it differently, and has a different perspective. I want to share my perspective on what this month means to me, what strides we’ve made, and, what work still needs to be done. However, I also want to hear thoughts and perspectives from others in the blind community.
What This Month Means To Me
To me, Blind Equality means being able to do the things that sighted people take for granted. There’s a lot that sighted people take for granted, such as reading the news, voting, reading and talking about books, and so much more.
Because of NFB. Newsline, and The National Library Service For The Blind And Print Disabled, I can read a lot of magazines and newspapers. I can keep up with the news, and have and participate in conversations about current issues and topics. I can read books that others are reading, and talk about them, including bestsellers and other high profile books thanks to Bookshare, The National Library Service For The Print Disabled, Audible, Libby and other sources that are accessible. We can have access to more books than ever, thanks to the Marrakesh Treaty also, which let’s other participating countries have access to our books in digital accessible formats, and vice versa. Mom and I read some of the same series, the Stephanie Plum Series by Janet Evanovich being a prime example. Both of us can let each other know when a new book in the series is released, and, I can read it on my braille display or listen to it in audio format, and Mom can read her print book. We can swap book recommendations with our blind and sighted peers! For me, reading is very important, because it’s a form of escape for me, and a form of self-care, plus, it’s a big cornerstone of my coping mechanisms.
It means being able to be on par with and participate along with the sighted community.
All blind people want is to be on par with or at least be able to participate alongside their sighted peers. Whether in education, employment, or other activities. Do I and other blind people need accommodations and adaptations? Yes, we do! But, those adaptations and accommodations allow me to still have the same enjoyment, fulfillment, learning experiences, etc.
It means being able to live the life that I want to live, not the life that someone else wants me to, or thinks that I should live.
I know there are people, that think that people with disabilities should just be in the background, and not have a life of their own. They think that we don’t have preferences, can’t live independently, etc etc. But, we can and want to. The same stereotypes, beliefs, etc affect the blind community. People think that we can’t work in tech support, or other jobs. They think we should be shut away. We do have preferences, we can live independently with the right supports etc. While I’m more of an introvert and prefer being at home rather than being out and about a lot of the time, another blind person might be an extrovert and prefer hanging out with friends and going out to eat after an NFB. Chapter meeting. Some people may not be able to go out much, because of other disabilities, or lack of access to transportation, etc. But, they still want to connect with people on Zoom and over the phone, etc.
It means being able to be in advocacy. I advocate for blind people, and other disabilities. I love helping people with their DODD. and Medicaid and other things. I love giving resources to anyone that needs them. I can be in meetings with policymakers from different agencies, and state legislators, and talk about various laws relating to people with disabilities.
It means being able to have choice.
This could be anything, from what I want to eat, where I want to order food from, and how I want to read my books and magazines, the list is endless.
When I read a book, I like to read it in braille if and when possible. Of course, sometimes, I have a problem that a lot of bookworms have. I have narrowed my reading choice down to 2 books, but, can’t decide which one I want to read first. Well, I decided to read one in braille, and, I listened to the other one as an audiobook!
This month means these things, and so much more to me. While this month is indeed a time for reflection, it’s also a time for celebration. In a time where people with disabilities, including blind people still face a lot of challenges, barriers, and more, we should also raise a glass and toast to the strides we have made!
One timely stride we have made, is that we can vote accessibily and independently, thanks to the Help America Vote Act or HAVA. passed in 2002. This law mandates polling places have at least one accessible voting machine, among other things.
We have VoiceOver, which is a screenreader on Apple products. It allows blind and low-vision people to use products like an Ipad, Iphone, and Mac for example. I’m writing this blog using an app on Iphone, with a braille display paired to it via bluetooth. There are also other screenreaders that we can use on other platforms, such as Non-visual Desktop Access or NVDA. or the built-in screenreader on Windows called Narrator, or the Talkback screenreader that’s on Android devices.
We also have the American With Disabilities Act, passed in 1990 that gives protection to people who are blind, and have other disabilities in employment, transportation, and education for example. These are just some examples of the victories and battles that we have won. Along with reflection, and celebration, we also need to realize that there’s still lots of work to be done, and there’s still a lot of battles to be fought.
First off, there’s still a lot of disparity and inequality surrounding employment, of people with disabilities including blind and low-vision people. Stats show that 70% of blind people are unemployed. We should be creating opportunities for blind people, and continue to advocate for employment of blind people. We should also eliminate any burreaucratic red tape that could and does ensnare people at any level of the employment poocess. Departments of Rehabilitation should also be finding ways to use federal funding they get. Every year, millions of federal dollars go unused and get sent back every year. We could use these dollars to for instance, pay for college. There should also be a wide choice of jobs, hybrid, in-person, and remote work-at-home jobs. That way, blind people can choose a position or job that works for them, and their lifestyle and circumstances.
Another big one is the elimination of sub-minimum wage. Some states have done it, and some states are moving to do that. However, while we advocate for sub-minimum wage elimination, we should also be making sure that there are protections for people who are on any type of benefits, and, protection from retaliation from employers including complaint processes and investigative proceedures for employers caught doing this. We should also be advocating for supports still being in place such as day-programs. A reason being is that this may be the only support that a person has access to.
We should be reforming/updating the Social Security system for blind and disabled americans. Such reforms and changes, include but aren’t limited to making sure the amount of money being received reflects current economic conditions and cost of living, and will be able to keep up with future changes. Another reform is raising the amount that people can keep in savings without penalty. Right now, at 2 grand, people can’t have a rainy day fund, for emergencies, such as a broken appliance, or equipment repair, or save up for other things. One other reform that we should be advocating for, is elimination of the earnings cliff. Anyone whose on SSI. and working, and also receiving other assistance such as Medicaid, is on this cliff and hanging on by their fingernails. People who are on these coverage and benefit systems depend and rely on them to receive timely and much-needed medical care and financial support.
Another reform we should be advocating for, is the elimination of the marriage penalty. People should be able to get married regardless if they’re on SSI. or SSDI. Their benefits should not be cut off especially if both parties are disabled and rely on these benefits.
Another thing we should be advocating for, is web and digital content accessibility, and accessibility in the digital age. We live in a time where people order their groceries online for delivery, we pay our bills online, and order food online for example. Much of our lives are in the digital space. Sadly, while sighted people are able to enjoy these luxuries with little to no issues, people with disabilities including blind people, have to contend with inaccessible websites, forms, apps and a lot more. Worse yet, there’s either no legislation to protect us, or, the legislation we have has not kept up with the changing times. Right now, the only tools we have are either talking to the companies, and agencies, and a rule in the ADA. where any website with a disgov domain must be accessible, and, either continued advocacy or a lawsuit. This requires a 2-pronged approach. First, we should be advocating for updates and changes to current legislation we have se as the ADA. and the Rehabilitation Act, and section 508. These are great tools that we have in our toolbox, and they give us a great deal of protection. So, we should update them to reflect current times, and keep them updated, as times and technology advance and change. We should also make sure there are plenty of resources at the state and federal governments disposal to enforce these laws and regulations. Because you can pass or reform a law all you want. But, if you don’t enforce it, then there won’t be much weight and teeth behind it.
The second prong to this approach, is writing and passing new legislation that is spicifically geared to these issues, such as legislation regarding the accessibility of web sites and digital content. This will help ensure that there’s spicific rules, regulations, and other legal tools that are dedicated to it, and the issues that inevitably will and do arise related to this. This creates more tools that we can have in our toolbox, that can have more precision. Of course, we should also be making sure that these pieces of legislation be updated regularly to reflect both the changing technological and digital landscapes, and the changing times.
This will help give people with disabilities, lawyers and others who represent them and guide them through legal processes, and, the courts to be able to make sure companies and agencies are held accountable. It should not take a lawsuit like the one that was filed with regards to Domino’s for changes to be made, and a spotlight to be shined on these issues.
Yet another battle we have to fight is to make sure that braille sticks around. Sadly, braille readers and users are in the minority in the blind community. People who learn and use braille, are more likely to be employed. There’s a widely held belief that braille is going away. I highly disagree. I think that braille is entering a new era, of braille on demand and also electronic braille. A lot of blind children are not taught braille. This has to change. We should be educating parents about braille, and, helping give them resources to teach their blind and low-vision children. This sets them up for a great start in school and life. We should be finding ways to remedy the shortage of braille teachers in schools. Braille should also be taught in school and at home. Schools need to do a better job producing materials in braille for students, and make sure that they connect parents of blind kids with other resources that can provide braille litterature to their children, regardless of age. I’m very fortunate that Mom taught me braille. She started teaching me when I was 6 months old, and I’m 27 now. I can safely say that if I didn’t know braille, I could not do even half of the advocacy work that I do. I may not be able to write this blog either. Braille speeds up my productivity, and efficiency. I can be in a conference call, and listen to the speaker, and read messages in chat, and do other things with the aid of braille no speech needed.
We should also be teaching people who lose their sight later in life, or who are losing their sight. We should be connecting them with resources such as Hadley where they can learn braille.
Braille should not be so expensive. One of the big hurdles for many blind people, and their families, is the expense of braille materials and equipment. We should be making funding resources available to assist people and their families in buying braillers, braille displays, and other products and essentials related to braille, whether for work, school, or personal use. This includes any repairs needed.
One resource available to anyone who is a patron of the National Library Service For the Blind And Print Disabled, is they offer a braille-on-demand program, where patrons can either call their network NLS. library, or fill out a form online, and request up to 5 braille books a month.
Another resource that patrons can take advantage of, is the NLS. provides a 20-cell braille display to its patrons. You can call your network NLS. library and request one. You can read braille books and periodicals from the NLS. BIND. or Braille Audio And Reading Download, and, Bookshare, and NFB. Newsline, along with pairing it to your Iphone or Ipad.
This is just a small but by no means comprehensive list of work that needs to be done, and continued.
I’d like to leave you with 2 songs from the National Federation Of The Blind that talk about braille and technology. Let’s turm on our high beams to the highest setting, and, let these songs be your anthems!
NFB. Songs
Braille is beautiful by James Brown And The Cane Tips
I believe everyone is teachable and that everyone communicates, learns and processes information differently. This includes both people served and people providing services. Everyone has their own way in which they interact with others and go through the best of life.
This week I like to talk about being a cultural competent society when it comes to addressing our on going care crisis. People from different cultures have different lived experiences and ways they do their work or want to receive services. In thinking about culture, we must acknowledge that not everyone has the privilege of owning an electric can opener or robot vacuum or even a television. Some people have no idea how to cut an apple so that you get a star in the middle. Our upbringing and cultural experiences shape how we walk out our lives.
We have to have the mindset that everyone is teachable. This involves being patient and willing to help others grow in their knowledge of a particular subject or process to complete a task.
In the care crisis we are in that same ideology of life applies. We may have a set way of doing something or maybe there is the mentality that everyone knows how to make that box of macaroni and cheese that is in your cupboard. The reality is that not everyone knows how to make macaroni and cheese. Not everyone has ate macaroni and cheese.
We are a culture often that wants to believe that people “should” come in our home already knowing the basics. The reality is that these expectations are truly a result of our own incompetence in culture. To help ourselves we must let go of the expectations and be teachers and let ourselves also be taught about other cultures.
I firmly believe to teach others we must be open to being able to be learn from others. The way we do our daily tasks might be done differently and we have to offer grace and come with a heart that’s open to helping people know our way of how we do things.
People will stick around when they see you want to Teach them how you do things. They will watch you or others and learn by example.
I was once a jerk to people. It took me awhile to realize that everyone is teachable and just as I want to learn so do others. Being open to changing my perspectives about cultural and caregiving has changed who I am and also how I receive my care. I have found that learning about other cultures makes people want to learn more about me as I ask people about their traditions and culture and how they do different tasks or prepare different dishes.
All around we have to be open to learning and to help others learn too and the more we are open the more cultural competent we can become. The more we open the door to bringing new people to the tables of caregiving and helping this workforce crisis.
It can no longer be that measure of well so and so or the DSP used that 8 inch knife to open a can because they were too stupid to understand how to use a can opener. It is reality that, the direct support professional has never had privilege to use a can opener let’s be a teacher and help them understand how to use this nifty gadget we open cans with. At the same time, let’s understand why a knife is used to open a can – this sheer reality that if we are open we can learn something new or something we don’t have lot of understanding about.
There's a lot of truths about advocacy in Ohio, and, advocacy in general. But, a couple of them are both obvious and hidden at the same time, but, very real. 1. It's a BRUTAL profession! The things we see in our work/volunteer work would make anyone's stomach turn. Including very horrible examples of abuse and negelect, and people and families barely hanging on and just trying to get through the day. Plus, dealing with politicians, policymakers, and, putting yourself, and your story, out there is no cakewalk either. 2. On top of all that, you have to deal with your health conditions and/or disabilities! Ever attended and sat through a full day of meetings even though you were in massive pain, or just not having a good mental health day? Yep, I have! I went on calls even when I was sleep-deprived, sick, having a migraine, the list goes on. Cue what you want to say for the visual description, "I'm laying on my side with my headset on and my Ipad next to me because I feel like I just got run over by a semi. But, I'm still here ya'll! Although I might not be able to respond to your email for a week." 3. It takes a toll on you, physically, mentally, and emotionally
With all that you have going on in truths 1 and 2, it's no wonder that this is another truth. This stuff can, does, and will break you down. It will and can take a toll on you. This one is something I've been having to stare down the barrel for the past few months. It's why I took 2 months off in April, and, I just took more time off from certain things. Plus, sometimes, (ok, more often than not) I seem to try and channel my inner cat, thinking that I have nine lives. Your trauma will be reactivated at certain times too. I know because I've lived it.
But, all jokes and kidding around aside, these are serious truths and issues. While every one experiences this stuff to an extent at their job and/or volunteer work, if you're an advocate, you're a lot more susceptable to this stuff. So, in honor of August being Wellness Month, I decide to write about what MY version of wellness is and looks like. Every one's version of wellness is different, and, will be made up of different things. But, I wwanted to share mine, and, I hope that by doing so, it gives you some tools to put in your advocacy well-being toolbox. But, I also have a burning question. I want to know, what does your version of wellness look like? With that in mind, here's my version of wellness.
Feature 1. Humor
This goes for anything, but, especially advocacy, or life with a disability. You can either laugh, or go insane. Me, I choose laughter! Yes, I even laugh at myself. You can laugh privately off camera, when a politician stars spouting nonsense. You can laugh at the logic (or more often than not) lack of, when they make rules and decisions. You can laugh at the obsurdity of someone being told what they are and aren't allowed to use their transportation money for in self-direction. You can even say something like, "I don't smell a thing!" and laugh if you have no sense of smell, or offer to give your Dad ride to the hospital to help Mom with breakfast, if you're blind. Trust me, the list is endless! Should you laugh at every thing, and will you be able to laugh at every thing? No, you won't. But, try and find the humor when and where you can. Yes, even if you crack yourself up. Because, if you don't, it's almost a guarantee, that you will have a mental health breakdown or two.
Feature 2. R&R (Reading a good book, and relaxing)
I love to read! This is one of my oldest coping mechanisms. I have used this since I was in school, and, for me, it's an escape hatch. I don't get to do it as often as I used to, but, when I do, it's awesome! I read just about every thing too. I both read on my braille display, and listen to audiobooks.
Feature 3. Turn Up The Music! Yes, do it even when you're working!
My family is very musical, I grew up in a household where music was always playing. I listen to just about every thing, and I have so many favorite artists and songs, that it's hard for me to pick a favorite! Although I will say, one of my favorite artists is Citizen Soldier. I listen to every thing from the radio to music streaming services. Yes, I even put my readphones on, then, start jamming while I'm doing the never-ending task of paperwork. I also listen when I've had a tough day, or to try and get me through a bad mental health day, or just need to shut the world out for a while. Timetimes, if I need to reignite the advocacy fire under my feet and rear end, I'll put on one of my as I call it, "Advocacy anthems." One thing that I've been thinking about off and on, is making a playlist called Advocacy Anthems on Spotify which I use most often, and maybe YouTube Music. This is where I'd put all those advocacy anthems that I have. I'm also kicking around the idea of making it collaborative, and making it so that people can download it, or save it to their music libraries on Spotify and/or YouTube Music. A couple of my advocacy anthems are: Strong for somebody else by Citizen Soldier Every day hero by Citizen Soldier Battlefield by Srvcina
Feature 4. Having an activity outside of advocacy that you either help out with, or attend
Every week, the NFB. Ohio Community Service Devision puts on Happy Hour, where we play songs that fit a different theme each week. I put the flyers together for it, and send them out the night before. I have also been a DJ. and, help out the regular DJ. as well. I'm also a member on the committee for this event. What I try to do, is prep the next 2 months worth of flyers ahead of time, and send them to someone who helps make them look pretty. It's highly enjoyable for me! Plus, when I'm there, it's a chance for me to hit the reset button.
Feature 5. Something I Just Recently Added
I just had to take 2 months off, and, I just extended my time off. I hated to do it, but, I had to do it. I had to protect my mental health, and, I thought I'd be ok, but, I had to face the reality that I still wasn't.
Feature 5. Soundscape
Sometimes, I listen to the waterfall sound effect also when I need to relax, or shut the world out a little bit.
Features that are buggy and still a work-in-progress
1. Setting and holding boundaries I'm still working on this, though I have made progress. Plus, I think this is something we're all working on all the time.
2. Getting enough sleep Who has stayed up until the wee hours of the night doing paperwork, thinking about a case, or just getting prepped for the next day, or doing all of the above? I have, and then, yes, I would go to calls the next day shere hours later. Cue me chugging another 16 OZ. Coke can just to get through the day, and then doing it all again. Then, after all is said and done using the weekend to catch up on sleep, self-care, or even more paperwork. Or, being more tired and sleepy than hungry.
3. Trying to get at least one meal down This is easier said than done sometimes. Either because I'm more sleepy than hungry, or, I just don't have it in me to eat.
4. Putting myself first
When you're an advocate you're on-call 24/7! So, doing this is easier said than done. But, I'm trying. That's part of why I took time off.
Something I sometimes do as well
Sometimes, I use an app called Finch. It's a self-care game where you get a bird, and you get to name it, and, you send it on adventures whenever you do things to take care of yourself. You can write goals, do the writing exercises, breathing exercises, listen to soundscapes, and even go on journeys! You can also earn rainbow stones which you can then use to buy things for your birdhouse. They also have seasonal events, where they have different items you can win as rewards for energizing your finch, and doing self-care. It has some accessibility issues, but, can be used somewhat, and is available on The Apple App Store and Google Play. There's a free and paid tier. However, if you cannot afford a paid subscription, there's a monthly raffle you can enter, and, if your name is drawn, you can be given a month subscription of Finch Plus by a guardian!
Closing Thoughts
I hope I've given you some tools that you can put in your toolkit. I would love to hear what your wellness tools are in your toolboxes!
We tell people that the seats of engagement in the world of advocacy are for anyone but is that exactly true? When was the last time you invited someone uses an AAC Device to be at the table ? AAC stands for augmentative and alternative communication (AAC) device. Supports look different for everyone. In saying that, for some people it takes a lot more work to be at the table to advocate.
There are many people with disabilities who use AAC devices to communicate. We don’t see a lot of AAC users in advocacy circles. I think that’s it’s because the set up in most groups doesn’t exactly allow for enough time for everyone to engage and more so for people who use AAC technology aren’t always heard and sometimes their communication goes unacknowledged.
Earlier this year, I found my disability was challenging my ability to communicate. As a sometimes speaking Autistic person my verbal communication has always been limited. I have some other disabilities that also challenge my communication as well. Sometimes with one of my rare diseases I lose muscle control and the ability to speak.
I recently found myself grieving the loss of community. In the beginning of the year people saw my lack of cognition and my need for increased use of AAC. People in their own ableism pushed me out of my advocacy positions in the sense didn’t realize how much it hurt. when I tried to attend a smaller group with my AAC, it was awful. I felt so discouraged and it challenged me greatly as everyone wants to engage. I started to find myself at the center of insult. It made me realize in my transition to use AAC more that I wasn’t as welcome in the same circles and in fact people started to attack my ability to be a leader.
I eventually walked away completely from these advocacy spaces as the ableism tore me apart. I believe the action to be accessible and inclusive should examine this idea that true advocacy allows anyone at the table.
Our AAC is our voice and it is on fire sometimes if people just pause or stop and wait for the dialogue.
I believe advocacy must be intentional with the idea that everyone has a seat at the table whether they use AAC or use the assistance of another human to help them be heard we really need to realize people who use AAC are leaders in advocating too and welcome at the table.
Who loves their jobs either 100% of the time, or loves all parts of your job and what it entails? Who has been happy with their job for a while, or unhappy? I think we all have at some point, felt these feelings and struggled with these thoughts. Some of us may have even thought about writing letters, whether they be resignation letters, or something else. After much debate, I decided to write a letter to advocacy to talk about my feelings, and, I’m taking it a step further. By sharing it with all of you. So, here’s my letter to advocacy. I hope it’s something you can all relate to as advocates.
Dear Advocacy,
We have a lot to talk about, the I have some things to say to you.
When I first met you, I was nervous, but, I fell in love with you pretty quickly. When for lack of a better way to put it, I married you, I thought it was a match made in heaven. You gave me purpose, a way out of a bad situation, etc. You saved my life. Or, at the time, I thought you had and would. You brought me to places and people that I’d never been to or met before, and wouldn’t have gone to and met otherwise. I was greatful beyond words. You gave me chances and I took them because I felt safe. But, then, I screwed up in September. While it was rough, I got through it. I chalked it up to stress and, I got other opportunities, and took them. I seen some of the worst of humanity etc, and, while it hurt, I could deal with it. Because you cared about me, or I thought you did. Then December happened, and, I thought you cared then, you saved me, and offered support. You brought me back to life or at least it seemed you had. Then in January and Feburary, when me and a great friend of mine got treated like shit, and pushed out, I stuck it out. It was just a rough patch. Then the chair of one of the advocacy groups in this state resigned, and Lauren’s Law came into being, and, I had to take 2 months off. Then, you turned on me. You shamed me for my deteriorating mental state. You said I didn’t belong at your table, I didn’t deserve to be an advocate. All while also giving me an award! You make me question who I can and can’t trust now! You make me question my sanity, my safety etc! You have and continue to bleed me dry emotionally and mentally and have taken the money and ran. You’ve put me through hell.
Yet, in spite of all of this, I still love you. I still care about you. I still wayt you in my life in some capacity or other. Because I can’t see a life without you, and, if I leave you or divorce you, you’d find ways to pull me back in.
Advocacy, I’m thinking about leaving you, and contimplating divorce. If I do leave, I would want to take my closest frs/conections, and certain cases with me.
If you want and need me to stay, some things have to change. You better start treating me like and as an equal. You need to have and make a seat at the table for me, and help me fight to keep it. I want and need backup and support when and if I have to fight. Even if and when we don’t have the same opinions. I need you to accept me as I am, and, respect my mental health and the challenges that come with it. You need to respect and recigonize me in general, and, respect and recigonize the knowledge, work, etc. The uncertainty has to go also. I want to stay forever, but, I need a way to do that. You can even offer several ways. You need to be open to more terms, etc. You need to be open and ready for more terms potentially.
I’m trying to wait, and have hope, and be strong. But, my well of hope is running dry, I’m hanging on by threads to my strength, sanity, etc. I want things to just back to the way they were before. Back before all this stuff happened. Because even though I am trying not to, I still love you. Please give me a reason to stay, show me that I’m worth the fight, and that it’ll be worth it to stay. Because right now, I need some good reasons to stay.
If I leave you, I know I’ll jeopardize people’s situations, and yes, safety. All I can say is that I need a sign, a reason, anything at this point. Because I’m getting desperate, running out of hope, faith and strength. Dawn Bilpuch
Advocacy Series Part 3. What can be done to support advocates
By: Dawn Bilpuch
We made it to the end! We talked about a lot of things, every thing from what advocacy is and what it means, to what people need to understand. Now, to wrap it up, we’re going to talk about what can be done to supmort advocates. We love what we do. If we didn’t we wouldn’t be staying up til 3 AM. doing paperwork, or talking someone down and helping them through a crisis. This wasn’t meant to say bad things about advocacy. It was just meant to be educational and open people’s eyes. With that being said, let’s get into the things we can do to support advocates.
Make accessibility a priority. Make your meetings, documents, etc accessible. That incbbudes Zoom captioning, converting documents into accessible formats, etc. Also, making our rules, laws and other websites we need to access them accessible. This includes federal rules and regulations and laws. Make info about getting accommodations accessible and easy to find. Put things in plain language. Put alt-text on graphics and photos. The list goes on and on. Also, offer virtual testimony. Some people including family members can’t always get out to the statehouse to testify, and still want to testify and submit written testimony. Virtual options give people that choice. In case you haven’t noticed, accessibility is one of those issues I could get on a soapbox about.
Have an advocacy peer support network or group Advocacy can be very isolating. Not just because of the work, but, also, the nature of it, your disability(s) can play a part too, and where you live, and what you have to see and go through each day, along with many other factors, can play into this. As an advocate, you’re on your own, you have no backup, support etc. If things get to be too much or you need to vent, you’re on your own, and, if you have another advocate to go to, then that’s awesome! Creating a pwher support group or network for advocates both at a state and national level, will allow people to connect in whatever way is best for them, share what’s on their mind, bounce ideas off each other, and get and give support in a safe, nurturing, confidential space. People can then make friends and connections and talk outside the group if they want, and help each other.
Be understanding and meet people where they’re at, give every one a seat at the table. Meeting people where they’re at, and helping them when they’re struggling and giving them grace when they fall on their face is crucial. Also, giving every one seats at the table. Also, give people plenty of opportunities to grow, as people and advocates! Take other new advocates under your wing. I had someone do that with and for me, and, let me tell you, that is one of the best things to ever happen to me. We’re alike in a lot of ways, and have connected in a lot of ways over various things. They are the same person whose life I saved. She took me under her wing, and, into her group that she ran, and, I’m so glad she did. She’s taught me and still teaching me about policy, rules, how to get accommodations, and so much more. I can’t thank her enough. We have become very close friends, and wouldn’t change it.
Provide training One thing I think that’s lacking, is training on how to be an advocate, and surrounding all aspects of advocacy. Even if there’s training, it costs an arm and a leg, or you need college degrees. Not every one can afford or handle that. Offer plenty of free virtual and hybrid trainings, and, if they cost, offer ways for people to pay that can’t afford it, or find ways to reduce the cost if not eliminate it. Also, create some resources and have a resource hub for all things of this nature including places to go and get more spicific resources.
Eliminate, reduce, or find ways to get around dues Not every one is made of money, and, if you’re disabled, that’s definitely the case. Because while benefits are great, you don’t make a lot to live on, especially with prices going up like they are. Some people can’t apply for benefits because of whatever circumstance. I think that if there’s organizations that have dues, they should find ways to help people that want to join, but can’t because of financial limitations. That could mean reducing or eliminating dues, offering assistance to people who can’t pay, offering a one-time payment for lifetime membership, or nixing dues altogether. The sky is the limit in some way on this one. Also, make sure that current members know that they can come to you if they have financial issues at any point.
What do you think needs to be done to support advocates? Are there any resources you know of? Whatever your thoughts, please feel free to share them.
Advocacy Series Part 2. What advocates wish people knew and understood
By: Dawn Bilpuch
Here’s part 2 of my advocacy series. This time, we’ll focus on what advocates wish people knew and understood about their profession.
We’ve all had this happen. There’s always one or some friends or family that don’t understand what you do, or why you do it, or both, or they don’t understand the life you live, etc. In the last entry, we covered what advocacy and being an advocate means, and what it means to me, and asked what it means to you. While we may touch on some of the things covered in that part, we’ll also be covering some new areas.
Sadly, you’ll have people in your life as an advocate or other type of job especially public servants, that just do not understand what you do, why you have to do the things you do, and why you can’t just “leave work at the office” etc. What you have to do depends on the person and your situation. If you can distance yourself, that’s ideal. But, if not, things can get more complex. Also, while people may understand some things, they will never understand it fully. Because they aren’t doing the work, they aren’t living your life, etc. You’re the one doing the work, living the life, and every thing in between. I’ll be covering some things, but, I also want to hear from you.
We’re public servants, in some ways, similar to first responders. While we aren’t police, fire or EMS. and do not claim so be, we’re on-call 24/7 365 pretty much. Whether it’s for peer support, or dealing with unexpected crises in people’s lives, or any of a number of things. Yes, there’s still paperwork to do, emails to check and manage, the list goes on. Plans will change on a dime. It has happened. Sometimes, it may mean missing family events, or meals etc. That means you have to be flexible with us too. Realize that our work is very demanding time-wise, and we just have to go with it. The stuff we see, and, how it affects us, and what we have to do because of it. This one’s a tough one. We see a huge amount of abuse, negelect, depravity, broken lives, and so forth. We see people that have either slipped through the cracks or are slipping. We see people that continue to slip through the cracks for numerous reasons. The system in their county is broken, every one passes blame, not enough resources to go around, the list goes on. It’s rampant, and it’s constant. Trust me when I tell you, that this stuff changes you. It changes your psyche. It drains you mentally and emotionally. If you have mental health chaklenges, it can exacerbate them. Or you’re at risk of developing them. Or, if you have your own past trauma and bd experiences, (which, sadly, is quite common,) things can get even more intense, and draining, among other things Sometimes, we just don’t talk about it because you wouldn’t get it, or it’s too painful, or whatever reason. Sometimes, we just need to talk to people to vent, cry boeak down, whatever we have to do. Our day doesn’s end at 5 PM. Advocates don’t keep regular office hours. It’s near impossible. There’s sometimes there’s calls at 6 PM. or 9 PM. for instance, and things get quirky when other timezones are at play. Contrary to what people think, we can’t leave work at the office. Even when there’s no calls, you’re still keeping up with and managing emails, and, also, doing paperwork. Or sometimes helping people when their tech breaks down. The list is endless!
We’re not always extroverted. As I said before, we see a lot of crap. The inside of our heads looks like a crime scene sometimes. We are on calls, and the like all day long, around people. Plus, if you’re a caregiver as I am, things can get more intense. But, at the end of the day, the last thing I want to do, is talk on the phone with just anyone, or be around a bunch of people. It’s like what a tech or customer service rep feels like. They’re on the phone all day, dealing with the public. When they get done, the last thing they want to do is be on the phone 24/7 on off-hours. It’s the same thing. For me this is especially impoortant. If I talk to you it’s because either I need to vent, or I’m helping someone, or it’s a phone call I had to make when I had time, or, some other reason. Please respect that. When we say we don’t want to do something, go somewhere, etc, it’s not because we don’t love you. It’s because we’re peopled out, mentally, emotionally drained, and yes, physically too. Taking time off isn’t as easy as it sounds. The planning that goes into it for us advocates is intense. Even with our planning, we may not get that day off. It’s a weird profession. There’s people that get paid for it, and, others who do it as a volunteer thing. Then there’s people that would love to get paid for at least some of what they do. Do I want volunteer work? Yes. But, I’d also love to get paid for what I do also, and make a living from it. I’d even accept barter-and-trade, and I have in the past. Advocacy is a huge part of your being and identity, and who you are as a person. If we didn’t love what we did, we wouldn’t be doing it.
There’s a lot of other things that I want people to understand, but, I have a hard time finding words for them. I think that’s one other thing I want so to understand. Is that sometimes, as advocates, we want to talk or need to talk. But, sometimes, we just can’t put what we want to say to words. Sometimes we can write it better, and sometimes, we can say it better and sometimes it’s both. Other times, we have to find other ways to say what we want to say, such as sharing songs with people . So, with that being said, what would you want people to understand about being an advocate and advocacy? I’d love to hear your thoughts! Stay tuned for the last entry in this series, which will cover things that can be done to help advocates
Advoccy series part 1. What advocacy means, what it means to me, and what it means to you
Welcome to part 1 of a multi-part series on advocacy and being an advocate! In this 1st part, we’ll cover what advocacy means, what it means to me, and what it means to you.
What Does Advocacy Mean? The dictionary definition of the word advocacy is: “Public susport for, or recommendation of a particular cause or policy.”
But, it means more than that. Advocacy means different things to me, and, people’s personal definitions will also be unique.
What Does Advocacy Mean To Me?
For me, my personal definition breaks down into 2 categories. First, self-advocacy, or, speaking up for myself. That could mean anything from asking for an accessible version of a document, a braille menu, or asking for a big spoon because it’s easier to eat with. Then, there’s the more widespread advocacy on a state level that I do, or speaking up for and helping others. This could mean anything from teaching someone to use a piece of technology, educating policymakers on accessibility, or, pushing for rule or law changes. There’s more to it than this, and, it will be covered in other sections of this part of the series, as well as in other parts of this series. We will focus a lot on some of this also in the “What we wish people understood about being an advocate” part. But, we’ll touch on some of it here as well.
Being an advocate means I’m a public servant, whether I get paid or not. It means being on-call 24/7, which is also what is largely expected with public servants. I’ve gotten calls or texts at 5 PM. before, and, also late at night, that require a response. It means working LONG HARD hours, including weekends. My typical day involves being on several conference calls throughout the day, and, sometimes on phone calls with clients/p/etc. Sometimes, I have calls late in the evening too, or that could go into late evening. Between calls, I’m checking emails, and responding to emails, responding to texts sometimes, and trying to make time for person care, and, do paperwork. There’s been times where I have not been able to go to bed until 3 AM. if not later, for various reasons, such as doing or getting caught up on paperwork. It means giving up your weekends. At times, I have calls/meetings I have to attend on the weekends. Sometimes, I have to help people on the weekends. More often than not, I have to do paperwork. Some reasons are that this is the only time I have or will have, or, this might be the only time others have. It means being flexible with your time, and realizing that things can change on a dime. Sometimes, I can work in a day or 2 of self-care in, but, not always. Mostly, it’s doing paperwork. That day off you planned to take? Well, that may turn into only a partial. Plus, people take days off/vacation all the time, and, yes, they do have to plan. But, for advocates, they plan extensively and prep. Urgent calls? Yep, you still have to take them, or find someone who can handle it. It means not having a lot of free time, and, when you do, you lean toward taking it for yourself, not spending it with others. This is me. I’m on calls and in meetings all day. When I get out, sometimes, I need to vent. Just because I may call certain people more than others means nothing. I still love people the same. It’s just that when Im done, I’m peopled out, and, I sometimes need to vent and work on paperwork, or anything else. The things we see are beyond most people’s ability to comprehend. If we told you, you’d never understand, at least not fully, or even believe it. We see abuse, negelect, broken people and lives, and every thing in between. We see the system fail people and see people slip through the cracks, and sometimes, that reminds us of our own situation. It means that your meals, etc will be delayed or interrupted. It’s happened to me many many times. While it may be irritating at times, I don’t mind. Sometimes I don’t eat until 9 PM. or sometimes later. It’s to be expected! It means coming to the table, even when you’re not at your best, or in the best shape. I’ve been at the table with migraines, bad sinus and allergy issues, being sick, and, yes, even when I’m not ok mentally. It means being busy all the time. There’s always something to do, and while some weeks or times are busier than others, you’re still a busy bee. That means that you might want be able to call someone on the phone, but, you just have to text them. While we get that a sh* is sometimes better, it’s just not possible, or in our capacity. What Does Advocacy And Being An Advocate Mean To You?
I covered a lot of things in this entry! Hopefully I gave you all some food for thought, and, hopefully you can share it with the people in your life. Don’t worry, there’ll be more thought nuggets to chew on. What does advocacy and being an advocate mean to you? Feel free to add your thoughts!
Advocacy. It’s a word you hear a lot, and, it’s something you do a lot more than you realize. Whether you’re disabled or not, you advocate every day. Whether you are a person with low vision who asks for a document in larger font, or, a single parent asking for a different shift, so that you can take your kiddo to school the pick them up. Or trying to get a law changed or passed in your state, city, county or township, or even in the country, or giving testimony, you’re advocacting.
This is what I do every single day. Whether I’m asking for braille menus, or an accessible document, or trying to get rules or laws changed.
My name is Dawn Bilpuch, and, I’m a disability rights advocate, and a person with a disability. I have been blind since birth. This is an introduction to a multi-part series that I’m going to be writing about and for advocacy and advocates. This series will cover:
What advocacy means, what it means to me, and what it means to you
What advocates wish people knew and understood
What can be done to support advocates
Why I Chose To Do This
I have several reasons that motivated me work on this. The first reason, the original firestarter, came in December 2023. A friend of mine whose a fellow advocate, was being abused, and, was denied aid in a medical crisis, and, I had to bet the aides to give her water and oxygen. I ⊦ to save her life, because if I hadn’t been there, she may not be here today. That triggered some past trauma involving a family member’s medical emergency, and as a result, I deteriorated mentally and emotionally’like . It caused a serious if not severe mental breakdown. As a result, my work performance was effected. While I’m in a somewhat better place now, in some ways I’m still recovering. Regardless of how I felt and how it affected me, I’m glad I was there, and would do it all over again.
Then, earlier in 2024, I was (and still am) secretary for an ad?ocacy group in Ohio, a friend of mine and fellow colleague who was chair, was pushed out, and I experienced mistreatment, and, I began to think about it again. Fast forw4 to now, and, the person who took the chair position abruptly resigned, before a big event, and, I had to step away to take care of my mental health for 2 months. The response I got was not what I expected. Plus, a bill that I support called Lauren’s Law was introduced, and, that made the climate colder than what it already was. It’s left me with a lot of feelings of hurt, exhaustion, shame, to name a few, and, I have also been dealing with self-blame and self-doubt. So, I feel that one of the ways I can work through this is to write this series. This is an unflinching, uncensored account of and look at advocacy, and, what it means to be an advocate.