Thursday, August 02, 2007

Keynote Address-ADA 2007 New York-BW

Can we give a big round of applause to Cynthia for organizing this event. Thank you. I want to begin with sharing the following poem with you:
“If for one more day I could walk like I do in my dreams
I would feel the sand for the last time in between my toes
I would walk on a hot sidewalk in New York City
I would step into a hot bubble bath, grab my calves, and slide in.
If I could walk one last time I would run.
I would run down a hill slapping my feet on the ground as the impact soared up my thighs to my chest.
I would dance to a jazz string quartet in my father’s arms, put my head on his shoulder, take in a deep breath, smell the safety of his suit jacket, and just exhale: Ahhhh.
If I could walk again a weight would be lifted from my sagging shoulders.
I would be tall once more.
One last time.
But I can’t.
At least not right now.
Only in my dreams can I run, dance, leap, and feel the hot sand in between my toes.
Only in my dreams is there hope that comes true.
Someday I want to walk out of my dreams into reality.
Walk past what was considered “reasonable”-
What was considered “the best we could do”. I want to walk proudly, with grace, and beauty towards a future of mainstream bustling sidewalks, tall buildings, and even taller skies.
For those bright lights that live, breathe, and crave equality,
For those of us who think “reasonable” is a man made mistake, a safety net to remain ignorant and fair in without repercussion.
There will be a day when we don’t feel less-
When we don’t feel suffocated-
When we don’t feel ashamed-
When we aren’t ignored.
That day is soon can you hear it coming?
Shhhh listen.
There is a train in the distance approaching this crossing.
Put your hand on the ground.
You can feel it rumble.
It’s shaking the earth.”
First, thank you for being here. It is a privilege to be able to have the opportunity to speak here on this day, the 17th Annual Americans with Disabilities Act Celebration. What an important day this is in our country’s history and an important day for our community nationwide.
The poem I just read to you was one I wrote while in Graduate School locked away on the 14th floor of a stuffy office building, in a stuffy office, surrounded by piles and piles of folders containing old photographs of Vaudevillian performers, theatre reviews, and receipts for costumes. This particular poem I wrote seemed fitting at first; an expression of my angst over inaccessibility and the lack of support by the current presidency for Stem-Cell Research. However as I re-typed it in order to use it as a beginning for this Keynote Address I found myself questioning the meaning of the piece. It is interesting and valuable to look back and examine your past. Write about your memories so you remember. But there has to be a point when you accept the Beauty and Strength of who you have become and look forward. Our pasts define us and prepare us for the future. Our pasts also give us information to share in The Present. A Dialogue. First let’s define Disabled Culture from Dr. Steven E. Brown’s, Co-Founder, Institute on Disability Culture Article in the Independent Living Institute Newsletter 2001-12, entitled Disability Culture. Dr. Brown writes: People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities. It has taken a while for me to realize the importance of identifying with and finding strength in my specific Culture or Community and at the same time craving and politely demanding Equality for all in that group. Only when you find out who you are, then can you find your Culture or Community. This has been an interesting journey for me and it is not over, it has just begun. So today I would like to talk with all of you, an ensemble if you will, of creators, inventors, researchers, advocates, political activists, and community leaders about the importance of accepting your true identity in society, the current use of the terms we allow ourselves and others to identify us with, and what we can do as a community to strengthen our visibility in the mainstream world.
I remember after I was injured permanently in a car accident-1992 was the year-in 1993 I visited the infamous DMV upstate with my father. I remember this experience well. I had to travel the 90 minutes because after I was injured I had to get a new driver’s license. I remember thinking, why? What’s the big deal? Well you had to have an interview back then and be approved to drive again also they needed to assess your physical mobility and adjust your license restrictions or “needs”. Well after waiting an hour I went into this dismal, odd, stuffy conference room -people in these offices just have to throw some color on the wall-no one will get hurt- anyway this man entered from another door. He was decorated with many, many yellow ribbons for Desert Storm. He was much older than me. He asked me what happened, if I could stand up, what my movement capabilities were, again asking how I was injured. I remember thinking are these the questions on some sheet in the back office entitled “Five Questions to Ask The Newly Injured Because You Are Nosey?” Then he really solidified our relationship he pulled out a silver pen from his breast pocket and said, “Pull this out of my hand.” I was like what? I looked at my father confused. He said it again with a very serious voice, “Pull the pen out of my hand!” I remember ripping it out of his hand, politely, and then smiling. He Said, “You’re fine to drive.” This was 1993. I hope its different now. Because all I was thinking was would this guy approve a Quadriplegic the right to drive? And if he wouldn’t because of The Pen Test he invented- was that legal? After this learning experience I realized my life was going to be very interesting-everyday interesting. But I didn’t think twice about accepting what had happened to me as much as searching a very, very long time for where exactly I could call Home.
Permit me to talk about Words for a minute. Words. What words we use to address ourselves and our community is how others address us. This is important. Because what we claim as our role in society or our culture makes all the difference as to how we are perceived. There are many arguments about what is appropriate and good enough being discussed online. First the word handi-capped. Hmmmm. Handi-capped. I once babysat for this little four-year-old girl and she said to me, “Blair are you Candy-capped?” How adorable. She is now 17 and still a Freshman but that is either here nor there. Handicapped seems so out-dated and I won’t even bring up the dreaded “C” word. In the past. Then you have Disability. In the Oxford English Dictionary Disability is defined as: “Lack of Ability (to do something); inability, incapacity. Lack of money.” Okay the last one doesn’t apply now, but my father would argue that lack of money is one that might apply to me. Shopping is fun. Ladies….am I right?
Incapacity: a noun- inability or ineffectiveness-lack of ability, force, or effectiveness-physical or mental challenge-legal disqualification, a legal or official disqualification. (Microsoft Word Dictionary). Interesting. No one in this room is ineffective or in my mind “lacks” anything. In fact I believe we all are stronger than most and possess the Ability to problem solve quicker and with more “effectiveness” than most. There should be more Dialogue about this.
Back to the word “Disability”. Dis-ability. Dis-ability. This word holds a negative connotation. I don’t believe anyone in this room has the inability to do something. If anything we strive to achieve more than any other social group. Because of the negative connotation I would like to use Mixed Ability and Mixed Ability Culture- from now on and I invite anyone to do the same if they feel comfortable. Progress forward possibly. I feel all of us have the Ability to DO. To take Action and Achieve. All of our Abilities are Mixed. I do not take credit for creating the word Mixed Ability. Its origin, to me is unknown. I first heard it while dancing in a workshop at school. A colleague of mine used it in conversation. The Dance World is beginning to use this term or description a lot. So I am passing it along to you. Hopefully many of you already have it in your vocabulary.
When I was first injured I really had no idea what my new identity would be. I had no real understanding about how a permanent Mixed Ability would affect my role in society. I attended rehabilitation in Scranton, Pennsylvania, which that alone is a dreary thought-they didn’t let us out much thank goodness. In rehab, for eight weeks, I was the only woman on the Spinal Cord Injury Floor. The rest of the Rehab hospital was for Senior patients. I remember going down for rehab and the Physical Therapists would line up all the Senior patients in their wheelchairs along the wall. They sat there for a long time. As the Spinal Cord Injury patients took laps around the gym I would pass the older patients. Some were awake, some were not. If I had to sit against a wall in my wheelchair for hours I would probably nod off too. I just smiled at them as I walked around the gym in my braces and my walker. I felt they knew what I was going through-they were my people? They are the only people who I had to relate to and also a hard-core group of middle-aged men that lived on my floor. I look back now and I think how far we have come with technology and I hope The Rehabilitation System is much more advanced than it was back in 1992. From what I have seen it is. More can be done together as a community though. Can we make rehab cool in some way? Sounds strange but after eight weeks in Rehab and being forced to watch, in a hot stuffy not decorated room- the 1970’s Handicapped Public Service Announcement VHS Addition you kinda’ wanna’ watch somethin’ a little more up to date.
Returning to Poughkeepsie I was told about the valuable Resources available to me. Taconic Resources, VESID, Social Security. I still was not able to really find anyone my age who was injured. I remember not long after I returned home my father hooked me up with a Wheelchair Basketball Team and they invited me to a practice in Newburgh. I went and was excited at first then when I entered the gym I was easily intimidated. First, there were no women playing. Second, the players on the court were these hard-core Vets slamming into each other making jokes about knocking each other on the floor out of their chairs. This was way before “Murderball”. I remember these chairs rigged with duck tape. These men were as hard as their metal frames. At a break I recall one coming up to me and asking if I wanted to play. I said, “No, I’ll just watch.” After the practice was over a couple guys came up to talk to me. They were cool enough and pretty helpful, blurting out all kinds of places to go and where not to go. I couldn’t keep up. I was overwhelmed. There wasn’t anyone my age or gender. I left and I remember I was thankful there was a small community that existed but I was scared and felt alone because I didn’t really have anyone who I could relate to. This is 1993. I couldn’t even fathom playing tennis after I was injured. So the next few years would be ones of complete disregard for where I belonged and how on earth I would get there. I just tried to ignore my Mixed Ability. Until one woman, one sport, and one class at Dutchess Community College changed everything.
I am a firm believer in the discipline of Sports. With Athletics you have to show up. If you are on a team people depend on you. I played tennis and swam competitively in my teens and college. However after I was “confined to a wheelchair” or “permanently injured” I just love these descriptions of our “conditions”. I do not mean to make light of it only to point out the sterile kinda’ depressing nature of the terms or descriptions used. Here we go with words again. Confined. “Confined to a Wheelchair”. So limiting. I remember some of the articles, Poughkeepsie High School Tennis Player “confined permanently” to a wheelchair. News at Ten! Talk about letting others define you. Back then I would have agreed. Now the term is, I must be honest actually, it’s slightly amusing and I am only able now to make fun of the seriousness in regards to that particular label. None of us are “confined” unless we allow ourselves to be. Right?
Back to sports. There was difficulty finding a place to exercise that wasn’t crowded and inaccessible. I really wanted to find my place in athletics again so when a friend suggested I help him start an Adaptive Rowing Program I agreed. He helped me get in shape for a Regatta in Philly and I was able to win, with my rowing partner, the single and doubles race. Once I started rowing frequently I thought about tennis again. It is a funny thing I can’t recall exactly how I met her, but I will never forget the impact Cindy Birchfield had on my life. Like I mentioned I had no friends in chairs really and had hardly seen a woman in a chair. After I met her I was so relieved that she was in the community, knew others in chairs, was working professionally, succeeding, going to law school, playing sports professionally, and she was able to get me involved in Tennis again. I remember going to Vassar College and her cousin was running a Tennis Clinic. I hopped in the tennis chair and found that it wasn’t a waste of time like I had so arrogantly thought before but it was Tennis. Tennis Again. You could hit the ball just as hard. And if I wanted to I could practice and compete. I did. With Cindy. I remember this one tournament in Washington, D.C. Cindy and I were playing doubles together and we beat this pair from Pennsylvania. It was one of those wins that you never forget. The match was tough. The Pennsylvania Twins were let’s just say not very nice women, but Cindy and I won because we were focused and we played well together and she taught me how to play with grace once again. Cindy covered a lot of the shots I missed at net from the baseline. But most importantly Cindy was that role model a young woman like me needed. She did everything and never paused. Never stopped smiling. She was strength and grace personified. Women like her, women who work and are visible in the community help to make change and end stereotype by being available and being out there. From sports with Cindy I found myself back in school, Dutchess Community College where a young woman in the Registrar’s Office told me if I wanted a fun elective to take an acting class with Steve Press. I did. I remember our first class, he looked at me and his eyes said “I don’t know what I am going to do with this girl.” The first class assignment was to enter Stage Left, go DSC and introduce yourself and say what you want to be. It was my turn. I said screw-it I went first. I rolled on stage, smelled the hardwood floor, felt the lights on my face, and heard that addictive eerie silence only a theatre possesses. I introduced myself as Steve sat in the back of the auditorium. I remembered projection from my early years as a community actress a member of CERT. I said my name is Blair Wing and I am an actress. There is such a calm in the world when you know what you want to do with your life. When you know you never have to worry about that again. I found Acting and more importantly Theatre again and Steve mentored me through the discipline to where I am now. But would I be here if he had only seen the chair? Would I be able to get the auditions I have been on, the job,s and the acceptance into Grad School if he hadn’t forgotten about the chair and not seen me, an actress. He just saw me. This is why exposure in the community and owning a piece of the information highway is so important. We need all people to be involved in our journey to be a Mainstream Culture or Community. They help to mainstream us and invite us in-once in we can take over or co-exist. But when we are able to work with those who don’t see the Mixed Ability but the person that is priceless and so valuable a relationship. Like Steve Press. We will still run into the “Pen Testers” and the ever-so –amusing mothers in the supermarket scene. The young inquisitive child that comes up to you and asks, “why are you in a wheelchair?” You begin to answer and the mother, horrified snatches the kid away and says don’t ask her that! I always go up to both of them with my basket of food on my lap and say, it’s okay, (to the mother and child) and then just to the child, to the future, I look in their eyes and I answer their question, I smile, and finish shopping. Now that child-if it was left with it’s mom’s information-no fault to her ignorance is bliss-the child would be frightened for a long time of and never ask a person in a chair a question. And then the child will assume and makes its own answer-create a stereotype. Do what its mother has done. But if you kindly break past the wall and give then the information they don’t have then they now have the correct information and can share truth not stereotype. When you see then again they will approach you and not run away. You will be able to co-exist because you are, to them, just a person. You are not a secret anymore. Once we communicate correctly then we are all on the same plain. I think FDR knew that it wasn’t the right time to be completely visible, but people knew anyway. However he wasn’t perceived as a President with a “Mixed Ability” but a man who was a great President. And what a wonderful historical figure we have representing us.
We all need to agree that we are part of The Newest Civil Rights Movement. One that started in the 1970’s but hasn’t blown-up yet. I think our Civil Rights Movement has opened many doors and knocked down huge barriers but it hasn’t exploded yet. How can it explode and how can our community, The Mixed Ability Community, get the attention and respect it deserves? We have to become more involved with the influx of technology. We have to support and start more programs like the one Potential Unlimited does. What a brilliant artistic business plan. They go out into the community and perform. Theatre. The Universal Language-an old acting professor of mine says. The majority of Americans and people world-wide get their information from the internet, television, or film. I have been fortunate enough to get a few auditions for some TV Shows. No parts yet, just call me a part-time professional auditioner. One audition in particular I read for a major Network Series and the part was written for a woman my age in a chair, with tattoos, only her Mixed Ability was Spina Bifida. I have taken many movement classes and know this Mixed Ability well. I would be able to adjust, as an actress, but bring grace to the role and not visual stereotype. I get to the audition. I am so nervous. This one of my favorite shows. I go in the tiny, tight, stuffy office, almost knocking over a water cooler. I am seated in front of this twenty-something Intern and she says “whenever you are ready” I read the scene with her. I make eye contact, I react truthfully, not that she was giving me anything, but I stay small for the camera-keep it simple. She says thank you. I ask if she wants me to do something else, she says no. I leave and as I go to the elevator I see a young woman who fit the role perfectly. She had the correct Mixed Ability and I remember thinking, she better get it. I got a call from my part-time agent and she told me they didn’t cast me. I asked why. She said the Network thought I was too pretty and not handi-capped enough”. Wow. I asked if the other young woman was cast and my part-time agent said no. Then I thought, maybe they will look in LA for someone. A few weeks later I turned on the TV and saw the episode I auditioned for. I knew it was the show because I had memorized half of the female character’s lines. But I looked closer at the actress the used. I knew of her. She didn’t have a Mixed Ability. She was an able-bodied actress with a big forehead. She was also doing a horrible job at “acting” like she had Spina Bifida. She was curling up her arm and leaning over to one side. Gimme a break. I cried. I cried for myself and the other young woman who auditioned. Then I sucked it up and watched the rest of the show. I learned a lot that night. It is NOT the thought that counts. We must get members of our Community in these roles. Correct, truthful representation. It is crucial. If you notice, and I have because I watch a lot of television, there are not many people with Mixed Abilities represented on TV. “Little People, Big World”, Heather Mills dancing on TV, no cast member in a chair in The Real World maybe that aesthetic is not visually pleasing to viewers yet-as you watch these programs see if the concept of the piece or the show is about the Mixed Ability or the actual life the person is leading. Many times our community is represented as stereotype not as someone who loves or cries or succeeds. We are considered “inspirations” because we survive despite our situation. This confuses me. I don’t want to be looked as an “inspiration” because then I am being defined forever by my Mixed Ability and that will continue to be the focus and not me, the individual. The Woman. The Human Being. The One who deserves equality like everyone else. If we are defined by our limitations by society then is the Law that protects us okay to remain limited? We need to keep talking about this, and then continue to DO something about it. However before I burn the Inspiration Bridge I want to say that only in the last few years have I realized that where we are in society as far as how our community is perceived we are still in the “inspiration zone”. We can’t ignore how strong we are in other people’s eyes. Because when we acknowledge our strength and our ability to be an “inspiration” then can we capitalize on that strength as a community as a unit as an ensemble of citizens who will then not be discriminated against or continue to be mis-or under-represented. Once we acknowledge this Ability, this Strength then we can continue to move the legal, geographical, and political mountains that the people before us, like Cindy, have done. Like Potential Unlimited is Doing, Like FDR did so subtly, International Artists like Frida Kahlo-like all the others who exhibited today: Independent Living, New Horizons, AMPS…Deaf Advisory Group. Acknowledge and then capitalize on what has already been accomplished and continue to push for Amendments to the ADA. “Reasonable”. Not enough anymore. We can also begin to look at the experiences that have been published about the global issues affecting People with Mixed Abilities. How about the inconsistency in regards to the FAA Regulations. I flew once from London to Dublin. Before taking off the Stewardess came to my aisle chair as I was buckling up, everyone was on board, and she said out loud I will need you to move to the window seat please. I look at my colleague confused and then to the stewardess I said, I can’t walk, I have to sit here especially if I have to use the bathroom. She said there is no aisle chair, okay so I can’t use the bathroom? You are in for in a surprise, and we have to have you move just in case there is an emergency and we have to evacuate the plane we need you by the window so you will be out of the way of the other passengers. I was so happy after she said this. I smiled. I said no. She said it’s FAA Regulations. I looked at the two horrified people sitting beside me and they said they didn’t care if I was sitting in the aisle chair. The Stewardess said that’s fine as long as you understand she will be in your way and we have to evacuate you guys first. I looked at her and thanked her for being so concerned for my safety, I was even happier than ever to fly with Aer Lingus on this day. What a fun trip this would be. Once my humiliation and anger subsided, I asked my colleague what to do and she said: You must write all down-Shakespeare-You must write all down. Only then when it is published and read do people learn about what is still happening. I must write all down. I must capitalize on this experience; bring it to the next level. Put the information out there. And by capitalize I mean continue to search and gain equality. As I see the future I think about the past struggles other groups/cultures have fought for: African-American performers had to enter through the kitchens of venues and exit that way. This is now illegal. There are many stores and restaurants people in chairs can’t get in to. And if we can we have to use the back of the buildings, or small freight elevator, 90 Degree ramps-and if we can get inside these stores or restaurants we can’t use the bathroom. I don’t think this event is the place to rant about the injustices that remain but allow me the opportunity to put the thought or the bug in your ear that there are things we still need to fix, adjust, tweak. And once we gain strength as a community, once we are seen outside by everyone, then can we politely demand respect and equality and get it. I had a short delightful encounter with a businessman the other day at a car dealership. There hasn’t been a noticeable handicapped spot to park my car in. So after many times of doing the Oh-Crap-I-Hope-I don’t-Fall-On My Butt-As-My-Chair-Rolls-Into-Route-9-Transfer, I thought let me just ask this guy if he can make a designated spot. I went into his office and asked for a second of his time. I shook his hand. He smiled and I smiled. I asked how he was doing. He’s fine and myself. I said great. And then I asked him. When I have done this in the past there are always mixed results. Some people are oddly defensive as if the ghost of Johnny Cochran is behind me, others say sure no problem and it never gets done, but some understand the need and see the reason and do what this man did. After I asked him he said, you’re right there isn’t one. I’m such a dope. I get one right away and put it out front. And if Lowe’s has a sign in their store we will have one in an hour. Amazing. What people can accomplish with manners, professionalism, and respect is amazing. What a beautiful thing, this works, this life of ours works. All of us here today get to go out and continue to make change. We can make change. One conversation and encounter at a time. Change. Positive change. If everyone in here acts on an issue with the grace of our predecessors there is no other outcome but a positive one. We have let everyone know that allowing us to participate in society along will only benefit society as a whole. Our Mixed Ability Culture is one of the last ones to be included-to be mainstreamed. We will explode on the scene soon. This Underground Movement is coming to the surface. And, like I mentioned in the beginning, “There is a train approaching in the distance, put your hand on the ground, you can feel it rumble, we are shaking the earth.” Thank you.