Friday, February 19, 2016

How to be a Disability Advocate

I'm a public speaker.

For the last 3 or 4 years, I've found myself being asked to speak at more and more conventions on the topic of my understanding of the Americans with Disabilities Act (the ADA) and on Disability Advocacy.

Now, let's get one thing abundantly clear: I am not an expert. I'm an advocate. 

For a little over a year now, I've been a panelist at a Salt Lake Comic Con and Salt Lake FanX panel called "Disabilities in Pop Culture". At Salt Lake Comic Con 2015, I moderated the panel and curated a special video for it from some members of the HitRECord community about one of our community members who lives with disability, but does not allow it to limit her art.

I've been called an expert several times. Once again: I am not an expert. 

Why? I never want to believe that I know all there is to know. Once you get caught in that falsehood, you stop listening and start talking in a vacuum. Advocates cannot do that. The first thing I want to teach you is this: LISTEN.

"But shouldn't an advocate be the voice for the voiceless? Aren't advocates supposed to be loud?" 

I get this all the time. The short answer is yes; an advocate needs to be heard. The longer answer is that an advocate needs to be educated about what they are advocating for - and disability is a HUGE thing to try to be educated on. Disabilities run a broad range. Being disabled doesn't necessarily mean that you can speak for everyone else. Being an advocate doesn't even mean you get to do that. Being an advocate means that you try to learn everything you can so that when others need your help, your voice, your guidance... you're prepared. This is going to require a lot of listening. 

Now, when I say "listening", I do not necessarily mean that in a literal sense. The ability to hear does not limit your ability to listen. 

I put an emphasis there because I want to point out that I am... let's see if you can guess... not an expert. I make mistakes. I try to learn from them. Many years ago, I realized that my own disability advocacy had a big blind spot: The Deaf and Hard of Hearing Community. If you don't already know this about me, I have an obsession with the advancement of prosthetics. It's fascinating to me. When I learned about the Cochlear Implant, I learned that I didn't know nearly as much as I thought I did. I learned that something viewed by part of the population as a benefit or a tool for overcoming adversity can be viewed by another part of the population as an oppressive hinderance. Confusion overwhelmed me. My own ASL abilities are lacking. I've attempted to learn on 5 separate occasions from 5 separate instructors. My ASL is still terrible. 

As you can guess, this made listening pretty difficult. Luckily, difficult does not equate to impossible. I delved into books and film looking for answers and understanding. "Sound and Fury" (2000) and "Children of a Lesser God" (1986) left me feeling sick to my stomach. Here I was, telling people how prosthetics are so amazing... completely oblivious to how callous and cruel and, ultimately, ill-informed I was. To make matters even worse, I had never even attempted to secure an ASL translator for my events. 

You will make mistakes. 

Don't beat yourself up over them. Learn from them. Study and volunteer for any opportunity that grants you greater understanding. I told you felt pretty sick about my lack of understanding of the Deaf Community. The powerful voice in my head - the one that was always so determined to shout out loud for those who couldn't be heard? That voice shut up for a bit. Self doubt rushed in and I refused to speak at the next 2 events to contact me. If my own direct experiences with my disability and my with my daughter's disability hadn't shaken me back into action, I may well have given up all together. 

This is where I finally learned the most important facet of my advocacy. You ready? 

It's okay that I am not an expert. 

I'm still learning. I will be learning until the day that I die. That's a good thing. It keeps me listening. It keeps me hungry for a perspective beyond my own. It keeps me humble. It keeps me motivated. 

I am not an expert; I am an advocate.

I hope beyond hope that this inspires you to start today. Don't wait until you know more. Dive in. There are places you can help; things you can do. Start by being honest about what you do know and what you do not know. Avoid assumptions.

"Can I be a Disability Advocate if I'm disabled?" 

Hell yes. Most of the advocates I know face their own disabilities or the disabilities of their loved ones every single day. Besides, who gets to tell you that you can't? If someone tries, they know less than you do. Shake it off and find out what you can do. Maybe what you can do is different than what someone else can do. You know what? That's totally fine. 

"Where can I start?" 

Let's break down your advocacy into three camps: 
1. Increasing knowledge 
2. Increasing awareness 
3. Public service

1. Increasing knowledge: What do you know about disability? What questions do you have? Are you familiar with the ADA? Choose what you want to learn about. Many colleges offer courses on disability. My Study of Disabilities course was one of my favorite classes. If you aren't familiar with the ADA, go to and get familiar. It's of the utmost importance and it will lead you
to ask questions that will tell you where to study next. After you're familiar with the ADA, I recommend this book to give you an alternate view of the legislation:

Penn & Teller also did an episode of their show,
"Bull$#*T" all about the ADA. 
If you're easily offended, don't watch it.
If you're not, it's worth watching.

2. Increasing awareness: Are the groups you belong to ADA compliant? Are they readily accessible and open to including those within the disability communities? How can you help to make your school or work a better place for differently abled people? Does your college have a Disability Awareness week? If not, talk to the student government and see what can be done. Are there any local groups you can volunteer with? Get involved. Once you're involved, you'll know what it is you want to say with that powerful voice of yours. 

3. Public Service: Learn ASL. Offer to help local event organizers make their events more disability friendly. If you see someone struggling, be willing and open to helping them - but don't force your help on anyone. Get in touch with your local Special Olympics group and help them fundraise! The Special Olympics fundraiser I organized was one of the highlights of my entire life. I'll never forget it as long as I live. 

Have more questions?
Don't hesitate to ask.
(It's kind of what I do.)

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