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.

Why Ms. Wheelchair?

Saturday a new Ms. Wheelchair New York was crowned – the 15th Ms. Wheelchair New York! It doesn’t seem like a year has passed since I wrote this post (my second post ever!) last September. As it always is each year, pageant day was an amazing day full of laughter, music, fashion, tears and love. This year we were honored to host the #RockItOnWheels fashion show featuring the designs of the amazingly talented and generous Timothy Westbrook. You may have seen him on season 12 of Project Runway if, unlike me, you have cable television and actually watch television other than PBS. Now that I know who he is, I will brag about him forever!

A man with white dyed hair wearing a black shirt pins the shirt of a woman in a wheelchair. She has brown hair and glasses and is wearing an orange shirt with flowered print ties.
Getting ready for the fashion show. Tim and I sang showtunes as he pinned me. I loved this shirt he picked for me! Photo courtesy of Danielle Colozza.

In case you don’t know, Ms. Wheelchair New York is an affiliate of the Ms. Wheelchair America (MWA) organization. MWA and the state affiliates are NOT beauty pageants. The organization exists to provide opportunities for women of achievement who use wheelchairs to educate and advocate for people with disabilities. Contestants are judged on their accomplishments, advocacy efforts, self-perception and communication skills.

I have been involved with Ms. Wheelchair New York since 2001, when I read an article about the late Nicki Ard, who was then the reigning Ms. Wheelchair America. More than one friend told me I should consider applying to MWA. I thought about it but never called until my best friend said she would nominate me herself if I continued to procrastinate.

I called. I applied. I was accepted as an Independent Delegate since New York did not have a state program. This meant I could attend MWA 2002 as Ms. Wheelchair New York 2001 (yes – I am a former titleholder) and would then become the State Coordinator for Ms. Wheelchair New York. As Coordinator, I would assume responsibility for holding annual events in my state to select future titleholders.

Photo of two women drinking wine. The women on the left is wearing glasses and has brown hair. The woman on the right has blond hair and is wearing sun glasses. The two are clinking glasses of white wine.
With Crystal, Ms. Wheelchair Nebraska 2001 – one of my Ms. Wheelchair “sisters.”

Throughout my life, there have been key moments I knew were critical as they were happening. These moments are turning points. Life is changed from this instant forward; like the day I learned I would be an exchange student, or the day I learned I would never walk again.

The minute I rolled into the contestant orientation the first night at MWA back in July 2001 was one of those moments. I knew my life would be forever divided into years before Ms. Wheelchair and years since Ms. Wheelchair. To say it was a week which changed my life simplifies it and does not capture the true impact on my world.

I returned to New York and started working on hosting my first pageant as State Coordinator. I kept going, serving as State Coordinator for eleven years. I was elected to the MWA Board of Directors for eight of those years and New York hosted the national pageant in 2005. I have volunteered as a judge at pageants in Rhode Island, Massachusetts and Nebraska.

I never considered myself a “pageant person” but looking back at my experiences, it is easy to see how someone might get that impression of me. Including my first pageant as a contestant, I have attended a total of thirty state and national Ms. Wheelchair pageants since 2001.

My involvement with MWA and the New York program has never been about me. It has always been about the other women who participate. I have remained involved because I feel driven to encourage peer networks for other women with disabilities.

As a child, I had one close friend who also had a neuromuscular disease. Jen was my peer, the only person I felt truly understood what it was like to live with muscles which slowly stopped working over time. I did not know any adults with physical disabilities. The only adult with a visible mobility impairment I knew of who was living life as a “normal person” (that’s what I said back then) was world-famous violinist Itzhak Perlman. I never had an adult with a disability to serve as mentor until I was in college.

Today there are more mentoring programs for teens and young adults with disabilities than there were when I was in college. Thanks to changing opportunities brought about by the Americans with Disabilities Act, people with disabilities have more opportunities to access their community. This does not mean everyone has a peer network of other people with disabilities they can turn to.

I know this because Saturday someone at the pageant told me how good it was to be around other wheelchair users because he never sees another wheelchair user in his rural Adirondack town.

I know this because last year a contestant told me she had never been in a room with so many other wheelchair users before in her life. She was 34 years old.

I know this because until I joined the Ms. Wheelchair family, I never had a network of other strong, professional, optimistic, energetic women to turn to whenever I had a question, issue or concern. I never had a peer to call when I was facing discrimination from an employer. I never had a fellow “chick in a chair” who understood exactly how it felt and would cry with me when I fell for yet another man who told me he just couldn’t “handle the chair” when he broke up with me.

When I accepted the role of Ms. Wheelchair New York 2001, I knew I was making a commitment which would endure. I honored my commitment and continue to volunteer because I have witnessed the personal growth in the women who have participated in our state and national programs. I don’t have children, and will never be a mother. But the women who served as titleholders while I was Coordinator are “my gals.” I celebrate their accomplishments like a proud parent, knowing I played a small part in offering them an amazing opportunity which they may not have otherwise discovered. I cheer them on, brag about their news, and encourage them when they are facing challenges.

While Ms. Wheelchair New York has never been about me, Saturday I was struck with emotion during the fashion show as I considered my role in bringing this network to my home state. Our fifteen – FIFTEEN! – titleholders and the dozens of women who have participated in our annual pageants have joined a sisterhood I helped create. If I had not said yes and applied to MWA in 2001, there would not have been an event yesterday, or last year, or any year prior. Of course, someone else would have eventually started the program in New York. But then “my gals” wouldn’t be my friends, and my life would be bereft of the joy and strength they bring to my world. And “my gals” would not have had the opportunity to spend a year telling their stories, advocating for their platforms, attending MWA and making life-long friends with their fellow sister titleholders.

Listing of the Ms. Wheelchair New York Titleholders: 2001 Denise DiNoto, 1st runner Up, Ms. Wheelchair America, 2002: Ms. Wheelchair NY 2002 Cindy Hill; Ms.Wheelchair 2003 Jerina Porterfield; Ms. Wheelchair NY 2004 Eva Galvin; Ms. Wheelchair NY Ms. Wheelchair NY Melissa Ortiz; 2008 Shameka Andrews; Ms. Wheelchair NY 2007 Kimberly Watkins; Ms. Wheelchair NY 2009 Crystal Bergmann; Ms. Wheelchair NY 2010 Deanna LaBuzetta; Ms. Wheelchair NY 2011 Michelle Fridley; Ms. Wheelchair NY 2011 Luticha Ducette ( 2nd Runner Up Ms. Wheelchair America); Ms. Wheelchair NY 2012 Pamela Hall (Ms. Congeniality Ms. Wheelchair America 2013); Ms. Wheelchair NY 2013/14 Jessica Patterson; Ms. Wheelchair America 2015 Andrea Dalzell
All of the Ms. Wheelchair New York Titleholders

The ripples of our individual actions echo beyond what we can envision when we make simple movements. I am a stronger advocate because I have  “sisters” in wheels alongside me. When I speak to elected representatives or business leaders, I speak for all of us, knowing we are relying on each other in our efforts to fight for equality. When I encourage a young woman to pursue her goals, I am offering her the peer support which has sustained me. When I listen to their stories of adversity and success, I am validating their struggles and reminding them they are not alone in their journey.

Saturday during the #RockItOnWheels fashion show, I watched Mariah, a young woman who is counting the months until she is old enough to participate in the pageant, dance and laugh as she wheeled across the stage. Her enthusiasm drew the loudest applause from the audience, who were captivated by her energy and presence. I got emotional as I watched her beaming from the stage, reveling in the moment. I realized I continue to remain involved in Ms. Wheelchair for Mariah and all the other young women who use wheelchairs.

We are paving the way for them to raise their own unique voices, to tell their own individual stories. We give them a platform and a microphone and watch them fly. It is a brilliant gift and I am blessed to have watched so many women soar and achieve great things.

Congratulations to all who participated in this year’s Ms. Wheelchair New York pageant: Theresa Mcintosh, Nancy Nydam, Yesenia Torres and the new Ms. Wheelchair New York 2016, Jessica De La Rosa. Welcome to the Ms. Wheelchair New York family. You are all winners and I look forward to watching all you accomplish!

Two women smiling at the camera, wearing sashes which say Ms. Wheelchair NY.
The new Ms. Wheelchair NY 2016 Jessica De La Rosa with Ms. Wheelchair NY 2015 Andrea Dalzell

Redefining Disability Challenge – Question 24

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty fourth 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:

If you could “cure” the disabilities that affect your life, would you? Why or why not?

It’s fitting this is the question for this week, because the Ms. Wheelchair America Pageant is happening right now. Women from 25 states are gathered in Des Moines, Iowa for a week of education and networking. At the end of the week, one will be crowned Ms. Wheelchair America 2016. Although only one will leave with the crown, all are accomplished women who will leave with a new network of “sisters on wheels.”

You may be wondering how Ms. Wheelchair America (MWA) relates to this post. Let me explain.

I participated in MWA when I served as Ms. Wheelchair New York 2001. I came as close as I could to being crowned national titleholder without actually being crowned. I was First Runner Up, which is an incredible and humbling honor. First Runner Up is not losing. Being First Runner Up means the judges thought I could do the job, but they made someone else actually do it. Not a bad gig!

The year I was a titleholder at MWA was the last year the pageant organizers gave contestants a choice of platform speech topics. We were asked to prepare a three minute speech in response to one of two questions:

If there were a ‘magic pill’ which would make you able-bodied, would you take it? Why or why not?

If your life were a country-western song, what would the song title be and what would the song say?

I did not like either question. The first question was a trick question with no possible “correct” answer. If you said you would take the pill, others would think you were not “adjusted” to disability or happy with your life. If you said you would not take the pill, people would question why you wouldn’t want to make your life “easier.” I did not think I could give a satisfactory answer to this question, particularly not at MWA where we spent a week celebrating our unique value as women with disabilities. Besides, how could I “cure” something I didn’t feel a need to “fix?”

I didn’t think I could answer the second question either. I don’t particularly like most country songs. Like many “Yankees” I think of country-western music as depressing. It’s about losing out on love, and cryin’ in yer beer on yer way to Alabama to visit yer mama in prison.

But, I’m a musician. So, in June 2001 I forced myself to listen to the country station while I was driving to my niece’s graduation party. I made it through three songs. They were all sad, and spoke of losing out on love, and everything going wrong.

I turned to my sister Caroline, who was riding in the passenger seat, and said, “My life’s too good to be a country song!”

“That’s it! That’s the song,” she screamed. “Quick – let me write it down so you don’t forget it!”

When I got to my parents’ house later that night, I sat at the piano and this is the song I wrote; the song I sang for my speech at MWA as a state titleholder.

My Life’s Too Good To Be A Country Song (music and lyrics by Denise DiNoto)

Drivin’ in my car

I hear another country tune

Some woman who is down and out

She don’t know what to do

She sings about her sorrow

And anguish drips from every note

I turn her off and shake my head

Thankful her story’s not like mine

My life’s been goin’ much too fine

See my life’s too good to be a country song

I’m much too happy for that

I’ve got a job I like, a car that runs

And friends who love me back

I may be sittin’ in my chair but you won’t catch me feelin’ low

See my life’s too good to be a country song

At least the songs I know

I hear those words of pity

Some people say from time to time

But I’m not sorry for myself

I’ve got no time to cry

I have dreams and ambitions

I plan to make them all come true

‘Cause I believe in workin’ hard

I know I’m able to

Just watch what I can do

See my life’s too good to be a country song

I’m much too happy for that

I’ve got a job I like, a car that runs

And friends who love me back

I may be sittin’ in my chair, but you won’t catch me feelin’ low

See my life’s too good to be a country song

At least the songs I know

Yes, my life’s too good to be a country song

At least the songs I know

 

**Good luck and congratulations to all of the woman gathered this year for Ms. Wheelchair America. I am proud of each and every one of you for speaking out, and making a difference. Enjoy this week and cherish the friendships you make. It doesn’t matter who takes the crown home. You are all winners in your own right.