Celebrating Blind Equality Achievement Month

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

Braille Is Beautiful (youtube.com)

Accessible Technology by James Brown And The Cane Tips

Accessible Technology (youtube.com)

 

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

By: Dawn Bilpuch

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!