Thoughts on Disability Rights for #ADA29

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3E Love’s Wheelchair Heart:

This Friday, July 26th, marked the 29th anniversary of the signing of the ADA. The Americans with Disabilities Act is very special to me and I’m happy that advocates all across the country get together to celebrate its passage… It’s a “disability holiday” of sorts that I look forward to each year. Disability Rights has obviously made a lot of progress over the last 100 years, and especially since the ADA was signed in 1990. But there’s still so much work to do, and to celebrate this disability milestone without looking at the whole picture feels a bit hollow.

You see, even though people with disabilities comprise over 20% of the population, we are not still living among our brothers and sisters as equals. For example, 29% of disabled people in America live in poverty, as opposed to 12% of nondisabled Americans. Children with disabilities are 3.7 times more likely to be abused than nondisabled children, and approximately 70% of disabled adults have experienced abuse at some point.

Disabled people are being left out of the workforce as well: the employment rate of disabled, working-age adults is only 40%. Of course not every disabled person is able to maintain paid employment, but even if you just look at people currently searching for work the numbers still don’t fare very well. 8% of disabled people who are actively looking for work remain unemployed, while that number sits at only 4% for nondisabled job-seekers – in other words, the unemployment rate is twice as high for disabled people. These stats are just the beginning – disabled Americans still face significant barriers to transportation, buildings, education, services, safety, and adequate health care. And if you also happen to be a disabled person of color or if you intersect with another marginalized group, all these barriers can be compounded. I’m not trying to be a downer here, I am just talking about reality. As I said, there’s still a lot of work to do before disabled people can experience equality in America.

Nonetheless, I find so much hope in the advocacy work of the disability community… Because things are changing from the inside! Advocates have largely shifted from the medical model of disability to a social one. Disability is no longer viewed as inherently negative – it is simply another way of existing in the world. With the proper supports in place, people with disabilities can be free to work, play, love and experience fulfilling lives in their communities. Many advocates now see disability as another form of diversity that can be celebrated– disability culture is thriving today and it is creative, unique, thoughtful, and strong. Activism efforts, thought-leaders, and the ADA have helped disabled people recognize their intrinsic worth, embrace their rights, and even to have Disability Pride.

I have certainly felt the subtle power of the ADA in my own life. I was born in 1984, so I started school right around the time the ADA was signed into law – I’m what you call the ADA Generation. And because of the ADA, I always felt that I had Civil Rights. Of course often these rights were not recognized, as access barriers have been a regular occurrence in my life. But something subtle about the ADA still permeated my consciousness. I knew in my bones that access wasn’t just about the “goodwill” or “pity” of businesses and social institutions…. I had a right to access because it was The Law.

Well, even though I am grateful to have been born in the 1980’s, I must say things continue to change for the better. Last year I performed at a national conference for my disability, Osteogenesis Imperfecta, and what struck me most was the session I did with the children. These kids seemed to have a whole different outlook on their disabilities – the general energy was one of self-confidence and self-acceptance and a delightful kinship with others who shared their experience. They weren’t trying to downplay or ignore or detach from their disability – as I had done at their age – disability seemed to be an integrated part of their identity. These children were living and dreaming big and they expected society to meet them in this place of potential. It was pretty dang amazing to witness.

The vibrancy of the youth that weekend really made me think – WE NEED TO DO BETTER AS A SOCIETY so these kids aren’t met with crushing disappointment and endless obstacles as they chase their dreams. Our government and businesses need to put their money where their mouths are and make access a priority. And we need to demand that schools provide education about Disability history, the Disability Rights Movement, and Disability Pride so that the cultural shift which is so desperately needed in America can take place.

You see, it recently dawned on me that there is a HUGE GAP between the thinking of the empowered disabled advocates of this country and that of mainstream society. The views of mainstream society seem to be largely fueled by two assumptions that just do not reflect the current experience of disabled advocates or where we are going. The first harmful assumption is that disability is negative – that it should be feared, pitied, despised, fixed, cured, or even eradicated altogether. The second assumption is that the barriers facing disabled people aren’t that big or important anymore, because the ADA was made into law and it solved all these problems. Well, pretty much any advocate I know could debunk these assumptions in seconds, and yet they persist in our culture… Why is there such a disconnect?

I have a few ideas that could explain why mainstream society hasn’t caught on to the rich and beautiful world of disability culture and why it seems so unmotivated to fight for disability justice. The first reason why I think empowered disability culture hasn’t infiltrated mainstream society yet is a lack of education. Now I am a musician and not a social scientist, but I look a (very unscientific) Twitter poll recently to see how much people studied about Disability History and the Disability Rights movement throughout their K-12 education. Out of the 236 responses, only 6% of people said they covered these topics for one day in school. A whopping 94% said they never discussed Disability History of Disability Rights. That means 0% of the respondents studied these topics for “several weeks”.

Now my informal Twitter poll can’t be looked at as scientific evidence, BUT surely it is reason for pause… Why aren’t kids learning whole sections on Disability History throughout their K-12 education? How else will they know that the US practiced forced sterilization on disabled people well into the 1970’s, or that institutionalization is not a thing of the distant past? Will they ever learn about notorious places like Willowbrook State School – which was finally exposed by the media for its filthy and degrading “care” of its patients and gross human rights violations – and how it didn’t close its doors until 1987? Will they ever realize that mainstream education wasn’t even an option for most disabled children until 1975 – less than 50 years ago?

Why aren’t kids spending weeks learning about the Disability Rights Movement of the 70’s and 80’s? Will they hear about the Rehabilitation Act of 1973 if they don’t learn about it in history class? Will they ever get to read about radical Disability Rights groups like ADAPT and their awesome protests, like the 504 Sit-In and the Capitol Crawl? How will kids learn what kind of rights are protected under the Americans with Disabilities Act? If children don’t learn the history, how can we expect them to care about the fight for Disability Rights when they are adults? And what’s more, if 1 in 5 people have a disability, don’t we want these disabled kids to recognize themselves in their textbooks – to learn about their own history and to dream about how they will write the next chapter?

Not only do we need to educate kids about Disability Rights and Disability History, but we need to change the way mainstream culture handles disability. Quite simply, I want people to encounter disability more often in mainstream culture! That’s one reason I tour so frequently and why I try to fit in speaking gigs and school visits in between concerts. It’s my belief that if people never see authentic, empowered disabled characters depicted in movies or TV or books, if they never read interviews by disabled artists or if they never see a disabled musician on stage – then they’ll resort to the well-worn, outdated assumption that disability is negative. Or perhaps worse, they’ll never think of disability at all, unable to perceive the barriers and discrimination disabled people face on a daily basis. It is my sincere hope that everyone in our society will learn about the harmful effects of ableism, not only through formal education but through disability culture: art, literature and visibility in the media. I want this knowledge to light a fire inside of them, inspiring them to actively fight discrimination in all its forms.

So thanks to the ADA, disabled Americans have protections under the law – and this is certainly a reason to celebrate today. But the next frontier is waiting… Never let us forget that we are valuable members of society who can shape culture for the better. Our history needs to be taught, our stories need to be told, and our rights need to be respected. And this includes the stories of disabled people of color and disabled LGBTQ people.  Let’s demand a diverse curriculum about Disability History and Disability Rights in the schools. Let’s make ourselves visible in American culture. Ask yourself, how can I amplify disabled voices through my work? Disabled people still face barriers to equality in America, and mainstream society needs to hear about this problem. And now, with the weight of the law behind us,  and with the utmost gratitude to the advocates who came before us, we will not be silenced.

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Author: violinscratches

Gaelynn Lea is a musician and public speaker from Duluth, MN. She is passionate about disability advocacy, personal growth, and authentic living. She was the winner of NPR Music's Tiny Desk Contest in March 2016.