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!