Redefining Disability Challenge – Question 23

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

What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

Earlier this week I had an online social media discussion about language and disability. The conversation revolved around the idea of person first language, or PFL (person with a disability, woman who has diabetes) versus identity first language, or IFL (disabled person, diabetic woman).

I have written other posts about my preferences regarding language, and you can read them here and here. I prefer journalists write or speak about me in the media using PLF. I am a woman with a disability, or a woman who uses a wheelchair. I use PFL myself – except for when I use ILF.

I use IFL when I am making a point about feeling disabled by society. When a business owner has prevented me from accessing a patio at the rear of the restaurant because she has not ramped the step, I am disabled by lack of access. When conference organizers invite me to speak but do not provide a means for me to access the stage or microphone, I am disabled by their lack of preparation and accommodation. When a Personal Assistant does not show up for her shift and I am unable to get to a bathroom at the time of my choosing, I am disabled by her lack of professionalism and respect.

I am disabled by others, not the neurological impairment which has been a part of my life since birth. Let me say that another way. The lack of muscular strength does not disable me. Other people, lack of access, or technology which does not work – these things disable me. I use IFL specifically when I feel excluded from full participation to make a statement of how others have made me disabled. I do not see myself as disabled until society or lack of access make me disabled.

My use of PFL in some instances and IFL in others does not mean I do not have pride in my identity as a member of the disability community. I DO have pride in my disability. I am proud to be a part of the largest minority, the only minority group anyone can join at any time. I think my hesitation with accepting others using IFL to describe me comes from the semantic meaning behind the words.

Because I live with a visible physical disability which requires me to use a wheelchair, my disability is often the first thing observed by strangers and those around me. It is a fact – humans notice differences. It is what we do.

Just because my disability is the first characteristic others see doesn’t mean it is the one I want to be remembered for. And it doesn’t mean my sole identity is as a chick in a chair. But for many people who live with visible disabilities, we are accustomed to being known or recognized for our differences. And at times we are subject to the assumptions made about us because of our visible disabilities.

People who don’t know me usually assume my neurological impairment makes me disabled, and feel pity for me because I use a wheelchair. The truth is, my wheelchair is a liberating, necessary piece of adaptive equipment which makes my neurological impairment less disabling. It is the lack of a functioning wheelchair which truly disables me.

This chair is just one part of who I am. Just as you don’t like always being seen as only one part of your identity (Sherri’s mom, or the IT guy, or the annoying person who parks across two parking spaces) I don’t want to only be seen as the token disabled person. See me as a person – a person with feelings, intelligence, and abilities – who just happens to use a wheelchair to get from point A to point B.

Don’t we all want to be seen as complete people? Doesn’t everyone want to be acknowledged for more than just one part of their identity? Just because we want to be seen for more than one component of our identity does not mean we turn our back on the pieces of ourselves. I am still a writer, a crocheter, an aunt, a daughter, a speech-language pathologist and a Rotarian.

And I am a proud member of the disability community, even if I prefer you use person first language when you write about me.

Unless you’re the idiot who parked illegally in the access aisle next to my van. Then I’m disabled by your ignorance, and I’m going to call the police to have your vehicle ticketed and/or towed.

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.

This is the colourful banner which reads "Blogging Against Disablism." The square is comprised of smaller squares of different colors. Most squares show stick figures standing. There are two white squares which show a wheelchair and a stick figure with a cane.

Practicing Pride

This post is written for Blogging Against Disablism Day 2015.  Please click the link to read other great posts written by bloggers around the world.

I first read Laura Hershey’s wonderful poem You Get Proud by Practicing when I was a college student. It was 1994, and the Americans with Disabilities Act was changing the physical landscape, opening opportunities for people with disabilities.

I was learning the law, and advocating for my civil rights. I asked for reasonable accommodations as I navigated my courses and clinical practicum settings. I led a group of students who advocated for increased physical access to buildings on campus. I wrote letters commending business owners who did a good job of incorporating access features and to those who did not comply with new codes.

I also made a mistake common among new advocates. I started too many of those conversations with “I’m sorry.”

“I’m sorry for interrupting your day, but I just wanted to let you know your accessible parking space out front does not comply with the code.”

“I’m sorry to be a bother, but I wondered who I could speak to about your accessible restroom?”

I never realized I was apologizing until a friend commented on it one day in the summer of 1994. I was recuperating from orthopedic surgery, my foot and leg in a plaster cast which came up to the middle of my thigh. We were shopping at a local department store when I suddenly had an urgent need to find a bathroom. We rushed to the accessible rest room only to find it locked with a sign directing us to ask for the key at the courtesy desk. My friend banged on the door while I chased down an employee.

“I’m sorry, but I really need to get in the accessible restroom and the door is locked.”

It took them nearly four minutes to track down the key. Apparently, there were customers who would use the ample space to engage in questionable activities so the store decided it was best to make people ask permission to enter. On that day, I didn’t care why the door was locked. I just needed to get to a toilet.

After assisting me on the toilet, my friend asked, “Why do you always apologize when you are asking for access?”

I was stunned. Is this what I was doing? She pointed out other examples to me and I began to realize she was right.

The next week I went to meet with the Coordinator of Services for Students with Disabilities to talk about the upcoming semester. As I sat in her office, I noticed a new poster on the wall. For the first time, I read Laura’s powerful poem. You get proud by practicing; the line kept repeating in my head as I read.

I sat there questioning if I was truly proud of who I was, or maybe still a bit ashamed of needing to ask for accommodations. If I was ashamed or embarrassed to ask for or demand equal opportunity, why? I read the last stanza again and again.

Remember, you weren’t the one
who made you ashamed,
but you are the one
who can make you proud.
Just practice,
practice until you get proud, and once you are proud,
keep practicing so you won’t forget.
You get proud
by practicing.

I left the office that day with two things: a photocopy of the poem and a new resolve to practice. I vowed to stop apologizing for my disability, my difference, my need for assistance.

I wish I could tell you I kept the promise. But the truth is sometimes I get tired, and I forget to keep practicing. I find myself without physical strength or mental stamina and before I know it, the apology is slipping out of my mouth.

“I’m sorry to detain you, but perhaps you didn’t notice you are illegally parked in an access aisle?”

“I’m sorry, but do you think you could move that display so I could fit down the aisle?”

The difference is now I hear it and I am aware. Rather than making myself feel guilty, I remind myself there will be another opportunity to practice. I will encounter another barrier or obstacle which will allow me to practice advocacy. I will hear another stereotypical question from another stranger which will allow me to practice expressing pride in my abilities.

The truth is I AM proud! I am proud of the body I was given, even the contractures and diminished muscles. I am proud of the wheelchair which grants me freedom and independent mobility. I am proud of my ability to use language to convey my thoughts and desires. I am proud of those advocates who paved the way for me to have access to community supports and services. I am proud of the young advocates I meet who are demanding equal access in educational and vocational settings.

Practicing is critical. It reminds us not to be ashamed. Practicing gives us power, choices and options. Practicing tells those we encounter, “I believe in my right to be here and I will fight anyone who tries to deny me.”

Practice your pride today. And tomorrow. And the next day.

Keep practicing for as long as it takes. And I promise to keep practicing too.