When Caring For You Means Doing Something Hard By Dawn 

When Caring For You Means Doing Something Hard By Dawn 


How often have you heard the phraise you cannot help anyone else until you put on your own xygen mask? I've heard this saying before, in defferent ways. To say that 2024 was a difficult year for me, would be an understatement. I faced a lot of obstacles, challenges, and many more things. One of the things that I faced was mistreatment. For the sake of privacy, I won't go into any details. All I will say, is that because of it, I had to makke the difficult decision to step back from some things, for mental health reasons. It wasn't something I wanted to do, it was something I had to do.

Well, this year, started off with me having to make a similar decision. Someone that would be chairing a committee I would be on, had an issue with something that happened in an event we both attend regularly. This person was angry, and not happy about the situation, and expressed those feelings in an inappropriate way. Then, the next day, they called me, and took their feelings out on me, instead of taking it out on the person in charge. The person in charge intervened and stepped up, and we resolved the situation. However, it left me with some questions, fears, and worries.
I had been in a similar situation before with this person, plus, it reminded me of things that I had experienced before. After thinking about it for a few days, I made the dificult decision to call the person in charge of committees, and step down from that committee. I know that people are disappointed, but, I had to make the right decision for myself. We were able to find a way that I could still do stuff to help out, just in a different capacity.
This was a hard call to make, but, I'm glad I did it. By doing that, I held boundaries, and set the tone for how I would like to treated.
As advocates, and public servants, we get a lot of crap thrown at us on a daily basis. Whether it's from people we work of, people in the various systems, or any other source, we have to take a lot of stuff. I'll admit, I was always one of those people that just took it, and tried working things out, and stayed in the bad situations. However, this time, I stood up for me. I took care of me.
Because another reason I stepped back, is because of time commitments. I'm transitioning into a new elected role, and I want to focus on other projects such as Heartbeat, plus I have other things going on in my personal life. Things are changing and shifting, and, I'm not sure where things will fit, or what this year will look like for me.
Also, I want to have some time to recover from 2024, and find a way to either heal, or live with the scars, and deal with some things that are still going on, and put my personal and professional lives back to rights.
It's important to have and stick to boundaries, stick up for yourself, both as a an advocate, and a person. It's not easy, and sometimes, it hurts, and it can be scary the first time or few times you do it. However, I'm speaking from experience, today, when I got off the phone, I felt lighter, and yes, empowered. I even felt proud of myself. Maybe I'll be able to work on this committee in some capacity at a later time, and maybe not. But, I'm sure that things will work out, no matter how the chips fall. Remember that things like this could be blessings in disguise. Ohio Advocacy Heartbeat is a prime example of this. While last year was painful for me, Ohio Advocacy Heartbeat was what came out of that pain, and, it's still growing. Plus, as a bonus, I get to work with a top-notch advocate, who I am honored to call a friend.

I want to hear from you, and, make space for people to know they're not alone. Have you had to do this type of thing before? Are you still working on it? What advice would you give to anyone struggling with this, both personally, and as an advocate? Do you have any stories like this, that you would consider blessings in disguise? I want to hear from you, and, I want to give you all a space to share your own thoughts. 

My Experience With Google Accessibility By Phone

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:


https://support.google.com/accessibility/contact/disability_c2c?hl=en



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.     

By: Dawn Bilpuch

Advocacy series Introduction

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.

Putting In My 2¢ Worth: Voting With A Disability

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.

Here are the links to get it.

To get it on IOS. App Store you can go here:

 

Ohio Voter Info on the App Store (apple.com)

To get it on Google Play, you can go here:

 

Ohio Voter Information – Apps on Google Play

 

 

 

 

6. Do your research.

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:

 

Ideastream Public Media Home | Ideastream Public Media

 

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:

Voting Resources | National Federation of the Blind (nfb.org

On this page, you will find the following:

• Ballot Marking Device Demonstration

• Election Information on NFB-NEWSLINE®

• Resources by State

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.

Voters with Disabilities – Ohio Secretary of State (ohiosos.gov)

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.

Everything You Need to Vote – Vote.org

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!