The words 'Disability Rights are Civil Rights" appear in red, white and blue lettering on a black background.

What the ADA Means to Me

When I was a participant in the 2002 Ms. Wheelchair America Pageant, I was selected as one of the five finalists. As a finalist, I had to answer two extemporaneous questions on stage during the crowning ceremony for the final judging session – a serious question and a light-hearted question. Like most of my peers, I chose to answer the serious question first.

In one single sentence, explain what the American with Disabilities Act (ADA) means to you.

I don’t remember my exact answer. I do remember thinking, “One sentence?! Do they know me?! How am I supposed to answer this in one sentence?!” I could hear my sister Sandy laughing in the audience, and knew she was probably thinking the same thing.

I said something about the ADA being crucial civil rights legislation which gives protection and access to millions of Americans with disabilities. I kept it to one single sentence as requested, at least I think I did.

Today is the 27th anniversary of the signing of the ADA. As I write a draft of this post while riding the paratransit bus to work, I am thinking of the many ways this civil rights law has changed my life and the lives of those around me.

This bus, every public bus that is accessible – all thanks to the ADA and the ADAPT activists who literally put their bodies on the street to force change.

I am going to work today, along with my good friend Bill who happens to be on the same bus this morning. Bill acquired his disability just a few years ago, but thanks to the ADA has been able to remain employed with reasonable accommodations from his employer.

I got out of bed this morning, went to the bathroom, took a shower, got dressed and styled my hair with the help of the Personal Assistant who came to work for me today. My personal care needs can be met in the community rather than an institution because of the ADA (and because I live in a state like New York which offers a Medicaid Buy-In Program for Working People with Disabilities.)

Think the ADA only helps those with disabilities? There are many examples of how ADA regulations have helped more than the disabled population, but here is one that is prevalent. Have you ever pushed a baby stroller down the street and used the curb cut to gain access to the crosswalk? What legislation do you think required those curb cuts? On behalf of all disabled people who fought for access, you’re welcome.

The ADA is about more than just physical access though. For me, the ADA creates a sense of entitlement because it tells me I am worthy of equality. Because of the ADA, it is illegal to discriminate against me and other disabled people. I have expectations of access now that I did not have twenty five years ago. When I travel in the United States, I expect to find curb cuts, accessible toilets, wider doors in hotel rooms, accessible public transportation, and accessible parking.

Does that mean I always find these things? Of course not. But thanks to the ADA, I have the ability to pursue legal action if I feel I am being discriminated against because of my disability.

Equality – that’s what the ADA is all about to me. It is not a guarantee I will succeed, but it is an important guarantee that at least I will be afforded the same opportunity for success as my nondisabled peers.

Of course that is not the way it really works. For many reasons, disabled people still face significant barriers to education, employment, housing and transportation. And of course, like the rest of the United States, we are waiting to see what our legislators will do to healthcare and Medicaid. For many, today is not a day of celebration, but a day of anxiety and fear.

That may sound extreme for those of you who do not rely on Medicaid for your daily needs. I have had friends tell me, “Oh, don’t worry. They won’t take away your personal care.”

Here’s the thing – we don’t know what will happen. And it is far too easy for someone who is able to get out of bed, pee, poop, shower, eat and live without the assistance of another person to dismiss our concerns.

My needs are not “special.” They are the same basic needs every human has. I have the right to expect that I can meet my needs in my community, just like everyone else. The ADA guarantees me that right, and when you need that level of assistance (if you live long enough, you will!) hopefully you will have that right too.

Freedom. Life. Liberty. The pursuit of my career, hobbies and other things that bring me happiness.

That’s what the ADA means to me.

Advertisements

The ADA @ 25: The Work Isn’t Over

This past Friday night, local disability organizations and the Self Advocacy Alliance gathered for a celebration and concert in honor of the 25th Anniversary of the Americans with Disabilities Act (ADA). I was honored to be invited to attend the event and speak about the ADA prior to the band taking the stage. If you have ever been invited to speak before the entertainment at an event, you know the audience is really just being polite as they wait to listen to the music.

Friday night’s audience was wonderful. They were attentive, engaged and even applauded some key points! Someone asked if I would share my remarks on my blog. I usually don’t write out my speeches word for word, so the version I present is always a bit different than my notes. I’m not sure I said everything I wanted to say on Friday, but this is my best attempt to write down what I intended to say on Friday.

Communities across the United States are having ADA celebrations this month. Today is the first ever Disability Pride Parade in New York City. I wish I could be there with my friends who are traveling down the Hudson right now, but my recent wheelchair repairs made the trip impractical. I urge you to find out what is happening in your area, and learn more about what you can do to help further the vision of civil rights for people of all abilities.

The organizers of today’s event asked me to say a few words in recognition of the 25th anniversary of the Americans with Disabilities Act, or ADA. This important civil rights legislation, which was signed into law in 1990 by former President George Bush, changed life for people with disabilities in many ways. Improvements in everyday life are all around us.

This park we are in has accessible parking, curb cuts, and accessible rest rooms. There is a ramp on the back of this stage which made it possible for me to wheel up here.

Many of us used public transportation to get here today – buses with lifts or paratransit. If you travel to another metropolitan area in the United States, their buses will be accessible too. Within the past decade, I have visited Little Rock, Arkansas; Salt Lake City,Utah; Ames, Iowa; Long Beach, California; and Tampa, Florida. I was able to ride public buses in each location.

When I was in those cities, I stayed in hotels. All of the hotels were relatively new construction, built within the past 15 years or so. My hotel rooms had elevated toilets, grab bars, hand held showers, and strobe lights which flashed if someone rang the doorbell.

Access to technology has improved life for many of us who live with disabilities. Closed captioning for television programs, and live captioning Internet broadcasts or webinars mean the Deaf or hearing impaired can participate. Cell phones and texting put communication with others right in our own hands. Braille elevator key pads and ATMs with audible signals increase independence for the Blind and visually impaired.

I first came to Albany in 1991 when I started college at The College of St. Rose. I learned how to be an advocate while I was in college. The ADA was new – and it was widely thought this law would change the world for people with disabilities. We would have protections and legal recourse if we faced discrimination! Reasonable accommodation became the new buzz phrase for us.

I studied Communication Sciences and Disorders because I had decided I wanted to be a speech-language pathologist when I grew up. When I started college, the school had four residence halls which were accessible. The only buildings with automatic doors were the Campus Center and Albertus Hall, the main classroom building. We used the service elevator in the kitchen to get to and from the main dining hall. And the elevator in St. Joseph’s Hall, where the majority of professor offices were, had a gate you had to close before the elevator would move. Many times I found myself stranded on the third floor because someone had taken the elevator down to the first floor and not closed the gate. When my friends and I walked downtown, either down Madison or Western Avenue, we weren’t able to stay on the same side of the street because not every intersection had curb cuts on all four corners. So, we would zig zag downtown, crossing at certain streets so we would have access to the sidewalk. I never took a public bus until I started using STAR paratransit services in 1993.

I was fortunate. As a child, I had parents and siblings who told me time and time again I was capable, I was smart, I was competent – I could do anything I wanted to. I grew up knowing I would go to college and get a job. It was what was expected of me.

Sadly, that is not the expectation often held by others when it comes to people with disabilities. When President Bush signed the ADA, he said the walls of inequity for people with disabilities would come down. Many have – but there are many more which need to fall.

Just look at employment. In New York State, the percentage of people with disabilities who are working age (21-64 years old) who have full time employment lasting at least a year or more is 20%. Compare that to the percentage of their non-disabled peers – which is 56%.¹

Full time employment is not attainable for everyone for a variety of reasons. If we look at employment – full or part time – for working age people with disabilities in New York, the percentage increases to 32%. One third of working age adults with disabilities in New York have some employment. That may sound good until you hear that 76%, or three quarters, of working age non-disabled adults in New York are employed either full or part time.

Employment affects everything. And I’m glad the federal and state governments are trying to create policies which increase employment for people with disabilities. Without jobs, many of us wouldn’t be able to live where we live, or drive our own vehicles.  We wouldn’t be taxpayers with discretionary income. We wouldn’t have the sense of self-esteem and purpose many of us have gained by engaging in activities which provide value to ourselves and others.

The ADA has made it possible for musicians, like the ones you’re about to hear in Flame, to tour and pursue their passion. The ADA, through the Olmstead decision, has made it possible for people with disabilities to live in their communities where they belong instead of in nursing homes or institutions. Community based supports and services, like the Consumer Directed Personal Assistance I use every day, make it possible for people like me and you to live in their own homes.

But no law can ever legislate attitude change. It is up to all of us to continue to educate and advocate for our rights – to show others our potential so they realize everyone has value, everyone deserves respect. Whether or not we want to be, we are examples of what is possible. The adaptations and accommodations we demand improve not just our lives, but the lives of those who will come after us. I promise to continue speaking up for all of us, and I hope you will do the same.

Congratulations to all of you for being ambassadors for people with disabilities here in the Capital Region. Keep up the good work and enjoy the concert!

 

¹Statistics related to employment in other states may be found at http://www.disabilitystatistics.org. For this speech, I searched using results from the American Community Survey.

Redefining Disability Challenge – Question 17

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the seventeenth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

Have you experienced discrimination because of disabilities? Discrimination comes in many forms, from refusal to employ or accommodate a person with a disability to treating that person with disrespect because of it.

As someone who has lived with a neuromuscular disease her entire life, of course I have faced discrimination. Everyone who lives with disability faces negative treatment from time to time due to their difference. I have also witnessed those I care for struggle against discrimination in their lives.

According to the United States Department of Justice, the Americans with Disabilities Act (ADA) “prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation.” The rules and regulations have been updated and clarified since the ADA was first signed into law in 1990. The law protects my rights as an American citizen and grants me equal opportunity in many crucial areas.

It is not so easy to legislate attitude. The law can stipulate how many accessible parking spaces must be created but it cannot prevent someone from parking illegally in an access aisle just because “they will only be a second.” The law can require a physician to have an accessible examination table, but it cannot require the staff to treat me with dignity when I request extra time during my appointment for help with positioning and transferring. The law can mandate the percentage of hotel rooms which must be wheelchair accessible but it does not guarantee the maintenance staff will be kind and respectful when I ask them to remove the extra armchair from the room to grant me more floor space.

I boycott any business I cannot independently access, and I write letters to tell them why they will not receive my money. If a business does not wish to follow the law, that tells me they do not want or need my money. I am not shy about telling others if they ask why I do not frequent a certain business. I also do not attend functions held in places which are not accessible. If it is important enough for me to attend, it is up to the organizers to make it possible.

Gross violations of the ADA are easier for me to manage than the microaggressions I face. A microaggression is a form of unintended discrimination. They are messages said by a member of a dominant group (in this case, those without disability) to a member of a marginalized group (in this case, those with disability). Often, the speaker may even think they are making a compliment. As examples, I give you these statements I have heard repeatedly – as well as the responses I usually manage to keep inside my head.

It’s good to see someone like you out.

‘Someone like me’ how?! I see many people with brown hair and glasses here. I see several people with smiles on their faces. OH – you mean someone using a wheelchair. Because of course, all wheelchair users are supposed to sit at home and never be seen in public. I forgot the rule today.

You’re pretty good with that buggy!

First of all, it’s a wheelchair – and an expensive one at that. It probably cost more than your car and that is not a joke. Secondly – you walk pretty well for someone on two feet but I didn’t fell the need to make that the first thing I said to you. Why did you feel the need to make my ability to independently move from point A to point B the topic of conversation?

You’re so pretty for someone in a wheelchair!

This may be the most backhanded compliment of all time. If a person is attractive, she is attractive. Period. Wheelchair has nothing to do with it. Wait – I forgot the other wheelchair rule. Not only are we supposed to stay at home, we are also not supposed to care about our appearance. Now I’ve broken two rules.

Be good to your heart – take the stairs!

These signs, often seen near elevators, make me want to scream. So, because I lack the ability to take the stairs I can’t be good to my heart? I’d rather not have to wait for the lazy people to get off the elevator so I can access it, so I appreciate the efforts to encourage stair use. But the unspoken implication is still there. Lazy elevator users aren’t being good to their heart.

I would rather be dead than be you.

I’d die if I had to depend on someone else all of the time.

I’d rather be dead than have to use a wheelchair all of the time.

If I can’t walk, just pull the plug.

Really?! Does my life look that bad to you? Does it really look like I am THAT unhappy with my life? Is disability REALLY a fate worse than death? Do you even know how those sentences (which I’ve heard many times before) sound to someone like me? As if my life situation is helpless and not worth living – is that how you really perceive me? Because whenever I hear statements like these, that is the message you send.

I give these examples not to sound bitter or angry, but to hopefully help you to think about discrimination in a different way. We have all been guilty of saying the wrong thing, or inadvertently using language we did not intend to use. Just because I use a wheelchair does not mean I have not made comments I regret.

Discrimination comes in many forms. Sometimes the discrimination which is not as visible is the more challenging to face.