What Might Have Been…

What might have been 3A friend of mine posted a video on my Facebook page yesterday. He said he was feeling nostalgic. It made me pause and smile. He gets it. I always get nostalgic when it is time for the summer Olympics. I have known this friend, Phillip since I was in fourth grade; he has cerebral palsy, like me. In high school, we were both part of a sports team for people with the same condition. I cannot speak for Phillip, but the experience completely changed me. Like many other people at that stage of their life, I felt awkward and gawky, having a disability that made me different from my peers magnified my isolation about a trillion percent in my mind.

When I joined that team, I had mentors for the first time. There were people I knew who had similar difficulties and they held jobs, had friends and were in serious romantic relationships. It gave me a glimpse of what my future could look like.

And it gave me something else as well. A burning desire to be good at sports. Competitions were held at various times every year. If an athlete did well in his chosen events at a regional level, then he would progress to the national games, and if those results were good, then said athlete would progress to international competition, what is now the Paralympics.

As a freshman, the dream seemed almost impossible. The fact that I was a wheelchair user was nothing but a negative in my head at that point I saw myself as a broken, defective, collection of damaged goods.

But sports? Participating in these events was something I could only do because of my disability, not in spite of it. As I began to practice around these older people who were successfully living out their dreams, my perspective shifted, in baby steps, towards a more positive mindset. And if I could only be an athlete on this particular team because I had a disability, I made up my mind that I was going to be the best athlete that I possibly could be.

I enlisted the help of the the head football coach at my high school, asking him if he would mind writing out a workout for me to follow. His kindness was infinitely more than I could have imagined. Not only had he developed a full workout for me to follow by the next day; he worked out with me daily for at least an hour for the next four years.

With his guidance, I learned how to reach my arms back farther on the wheel so I got more distance out of every push. He controlled the stopwatch as I rolled around the track, always giving gentle suggestions as to how to go faster. He taught me how to breathe correctly as I was lifting weights. He taught me how to stay in my lane as I was pushing around the track. In the process of teaching me these technicalities of how to get better results in sports, he taught me a multitude of lessons about life and good sportsmanship as well. Day after day he stuck with me, setting the bar slightly higher and encouraging me to reach it.

It’s not like he wasn’t busy. Texas high school football is almost like a religion, at least it was back then. Coach Cripps had the most wins in our school district throughout his career. He spent time with me because he believed in me and my dreams, and I can say with conviction that he has had more influence on my life than anyone else to date. Most of the football players that he coached would most likely say the same.

All our hard work paid off. Early in the spring semester of my senior year (1986) I found out that I was one of 37 athletes selected to represent our country in the International Games for the Disabled, what is now the Paralympics.

(Just an aside, the theme song for our team that year was Man in Motion from the movie “St. Elmo’s Fire.” It was written for a Canadian wheelchair user named Rick Hansen, who was wheeling around the world at the time. The whole story was a major inspiration to me, but I will save that for another blog post. It was a video of that song that Phillip posted to my facebook page yesterday…)

My favorite event had always been the 400 meter in track. At the time I was selected for the International Games, my best time was only five seconds slower than the world record in that event at that time. Almost everybody who knew me back then thought I was going to break that record and take it home before I retired from sports and left for college.

It was not to be.

The games were supposed to be in Belguim, and about six weeks before we were supposed to leave they were canceled because of terrorism. I felt like I had been sent to Narnia indefinitely, where it was always winter and never Christmas.

Part of me will always wonder what might have been.

A few weeks later I learned a valuable lesson. I was rushed to the hospital where both my gallbladder and appendix were removed in an emergency surgery. I had rarely felt that kind of intense pain before, and I could not imagine how much more frightened I would have been if that experience had happened in a foreign country while I was surrounded by strangers.

That is the other side of what might have been…

Obviously, other dreams have followed and like anyone else I have had my share of both struggles and successes.

When things don’t work out the way I had planned, as I process my frustration, I try to think about my “Belguim experience” and remind myself to be both wistful and grateful as I wonder what might have been.

Posted in cerebral palsy, changing perspectives, CP, Disabilitiy, Disabled Sports, exercise for people with disabilities, Following Dreams, Good Memories, Health, high School, overcoming challenges, people with disabilities, Sports, What some people don't think about | Tagged , , , , , , , , , , , , , | Leave a comment

It’s a Kick…

karate kickThe list of things that I like to do has always been both long and diverse. Here are a few examples.  Empower people and help others feel good about themselves.  Watch movies.  Challenge negative perceptions.  Advocate.  Cook.  Go for strolls on the bike trail.  Snuggle with my service dog.  Talk to my friends.  Write about what is on my mind.  Read. And the list goes on…Another item could be easily added to that list to make it more complete.  I like to say funny things that only I can get away with.

My disability presents many challenges. It probably always will.  That is just a fact.   Some I deal with only once in awhile, and others come up on more of a consistent basis.  Many posts on this blog have described my joys and frustrations with depending on caregivers, day in and day out, with almost every aspect of my life.

Through trial and error, I have discovered one of the best ways to ensure that both a caregiver and I will have a successful working relationship is to make efforts to get them as comfortable as I can.  That can be accomplished most easily through humor.

The Christmas before last, I was in the parking lot of my local Target, hoping to finish some last minute shopping with my caregiver, Dan. Leah, my service dog, was along for the ride.  We had just pulled into the accessible spot when his car died, completely.  It was dead meat, and from what I could tell, it wasn’t going to be resurrected any time soon without a major overhaul.  So Dan did exactly what I would have done in that situation. He called his parents.  And they graciously agreed to bring him another car.  Crisis averted.

After Dan got the keys and we were headed back into the store, he casually said “I’m glad that worked out.  Otherwise, we would have had to walk home.”

Without skipping a beat, I responded. “And that would have been a problem because, you know, I can’t walk…”

I don’t know if my comment simply caught him off guard in the moment, or if he never expected me to say anything like that, but in the middle of the entry way in Target, Dan basically fell to his knees with laughter.  It was nothing short of awesome.

A few weeks ago, I wanted to make tacos for dinner.  Because I am trying to eat a whole lot healthier these days than I used to, I was using cauliflower instead of hamburger. (Trust me, steamed in a pan with taco seasoning mixed in, it’s delicious, but I digress…) I had checked my refrigerator to see what I had on hand in the way of toppings and things all looked good, but a quick check of the shelves in the kitchen told me I needed taco shells.  A new caregiver, Kaitlin, offered to go to the store and get some for me.

“What kind do you want?” She asked as she was getting ready to leave.  “The regular ones or the ones with the flat bottom?”  My limited finger dexterity doesn’t do well with regular taco shells.  They break far too easily.  It’s a mess.

(I could have gotten the ones that fall over easily…I do that sometimes.  I call them “solidarity tacos,” but on that particular day, I was feeling a little more selfish…)

“The ones with the flat bottoms,” I said confidently.  “I need taco shells that stand better than I do…”

For literally about five minutes she laughed so hard that I was concerned that she might not be getting enough oxygen…

Why do I say those kinds of things to my caregivers as much as I possibly can?  Because I want them to know that I laugh at myself; that I don’t see my disability as something horrible or tragic.  I want my caregivers to relax around me so that they can relate to me as a person, and not simply “a woman in a wheelchair.” I hate the kind of distance that exists between people who have disabilities and those without disabilities, so often times I do my best to use humor in order to close the gap.  It’s one of the ways I show people that I am comfortable with my disability, so it is okay for them to be comfortable as well.

Does it work?  Most of the time.  Most of the caregivers who look like they have to go to the bathroom instead of laughing at that kind of stuff are probably best suited for employment elsewhere.  And to be honest, whether a caregiver laughs or not is one of the ways that I can tell if that caregiver has what it takes to make it in this job long term.

Besides, I love getting away with stuff that hardly anyone else can.

It’s a kick.  Get it?🙂

*********************************************************************

I don’t usually share recipes I make because most of my recipes come about simply by trial and error.  However, I have had several people ask me for my cauliflower taco recipe after they have read this post.  This recipe is one of my favorites so here it goes…

My Very Casual Cauliflower Taco Recipe

Take one head of cauliflower and chop it fine, to the consistency of hamburger. (or put it in the food processor)  Then put it in a skillet with about two tablespoons of water. A little more water may be necessary every few minutes. No oil.  Let it steam.  After about five minutes mix in about half a packet of taco seasoning (more if you like it extra spicy) Let that heat through another five minutes or so.

Fill the taco shells with some of the cauliflower mixture and then top with your favorite toppings for tacos.  Enjoy!

Posted in disability humor, Laughter, Making people comfortable, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

Lightning and A Lightning Bug

lighting bugsWords have always been extremely important to me.  Well, the right ones, anyway.  Mark Twain said it best when he said: “The difference between the right word and almost the right word is like the difference between lightning and a lightning bug.” I have found that sentiment to be especially true when it comes to ways to be respectful towards people with disabilities.  Many people don’t understand why it is a big deal, and I can only say that in my experience, word choice in a conversation can play a big part in whether I leave an interaction feeling empowered or patronized.

Whenever I speak to groups about disability issues, many topics are covered.  I talk about what it was like growing up with a disability, and the impact that the Americans with Disabilities Act has had on my life.  I enjoy explaining to people why I think advocacy is so important, as well the importance of breaking down barriers between people with disabilities and those without.  Perhaps my favorite thing to talk about, though, is the use of language and some empowering ways to refer to those of us who have disabling conditions.

Before I get started I want to make it clear that everything I am going to say is strictly my personal opinion.  I don’t ever claim to speak for everyone who has a disability in society, and I would never want to do so.  Different people with different disabilities have various opinions on this topic, and that is how it should be.  To each his own.

One of the most offensive words in the English language to me is the word handicapped.  Although there are different schools of thought on this, I believe that the origin of that word comes from the phrase “hand in cap” and it implies that the only thing that people with disabilities can do effectively is beg. While I understand that the word has been around for a very long time and that most people do not know its origin, every time I hear it, I simply cringe.  Side note: I refer to designated parking places as “accessible parking.”

I also consider myself to be a “person with a disability” instead of a “disabled person.” My disability does not define me. Not by a long shot. My perspective is instead that my disability is a characteristic of who I am, in the same way that I have brown hair and freckles and I love to laugh. I am a person first; my disability is secondary. My cerebral palsy is only one of the many complex and fascinating things that make up who I am.

I am not crippled.  I am not a gimp. I am not lame. I am not an invalid.  Separated out that word says in-valid.  My disability does not decrease my value as a human being.  Further, I am not a victim, I don’t suffer, I am not “stricken.” Rather, cerebral palsy affects my life.  In the same way, the fact that I live in the Midwest means that sometimes I have to deal with snow during the winter months.

I have a developmental disability in the context that I did not hit some developmental milestones at the same age as most of my peers. It took me longer to learn to crawl, and sit up by myself. I have never walked independently and I have always had to use some kind of mobility device to get from point A to point B..

Someone who uses a wheelchair for mobility is a “wheelchair user.” They are not wheelchair bound.  I have used some kind of wheelchair for as long as I can remember, but my butt has never had Velcro on it. Sometimes I sit in other chairs and I always transfer out of my wheelchair into my bed at night. I see my wheelchair simply as a tool I use that enables me to get from place to place.

The wheelchair that I use is called a power chair as opposed to an electric chair.  The reasoning is that the latter refers what happens to criminals on death row.

There are some people in society who have intellectual disabilities. The use of the word “retarded” is NEVER appropriate under any circumstances.

I like to think I am special in the sense that I believe every human being on the planet is unique, and all of us have various strengths, weaknesses and ways we view the world that make up both who we are and who we want to become. I don’t think I am special just because I happen to live with a disability.

Finally, just relax.  Most people with disabilities that I know are pretty chill.  Nobody, in my opinion, is going to be outrageously offended if you say things like “See you later” to a person who is blind or “did you hear the latest news?” to someone who is deaf. Most likely they will think that is pretty funny.

You have my word.

 

 

 

 

Posted in communicaiton, communicating respect, Deaf, disability etiquette, empowering language, handicapped, how to help, inclusion, Making Changes, negative perceptions, Parking Signs, Power Wheelchairs, Quotes, What some people don't think about | Tagged , , , , , , | 2 Comments

What’s Your Chocolate Cake?

chocolate cakeI am a big fan of TED talks.  That is Technology, Entertainment Design talks.  Not all of them, mind you.  Anything over about 15 minutes has to work hard to hold my attention.  But every once in awhile I do a random search on YouTube and scan possible videos about subjects I am interested in.  TEDx talks are particularly intriguing.  They have a limit of eighteen minutes, so they tend to be right up my alley.  Who knows when I will learn something new?  And I am always up for that.

It was with that kind of energy that I was searching YouTube when I came upon the video a few months ago by Haben Girma, according to the BBC “Women of Africa” series, Ms. Girma was born in the United States after her mother fled Eritrea as a refugee in the early 1980’s.  She was the first deaf-blind person to graduate from Harvard Law School.

In 2014, Ms. Girma gave a TEDx talk (a self-organized TED talk out of Baltimore) about lawyers in public service.  In that video, she describes the circumstances that led to her desire to become an attorney.

She received her Bachelor of Arts degree in Anthropology and Sociology from Lewis and Clark college.  While she was a student there, she lived in the dorms for two years, and therefore, ate all her meals in the cafeteria, where there were five food stations.  When she started classes, she asked that staff from the dining services office email her the menus each week so that she could put them in the screen reader on her computer.  That way she could transcribe the menus into Braille.  It was a good idea, and the staff agreed, but they regularly forgot to follow through. They offered to read her the menu, as they had for other blind students in the past, but they didn’t put together why that wouldn’t work at first.  Ms. Grma cannot hear what was being read to her.

She recounts that she tried to talk to the cafeteria manager several times, but was all but dismissed.  He told her, pretty much, that emailing her the menus from the cafeteria on a consistent basis was too much of a hassle for the staff, that access to the menu was too trivial an issue for him to be concerned about.  He suggested that she should simply “appreciate” that she had meals served to her every day.

With that, as many college freshmen would, at each meal she simply went to whatever station in the cafeteria she got to first, and settled for whatever food was served to her.  In her words, this method of doing things led to many “unhappy surprises.”

Over time, she made friends on campus and often shared meals in the cafeteria with her fellow students.  It was in this way that she learned that sometimes the cafeteria served chocolate cake, and Ms. Girma thought “I love chocolate cake.  And when there is chocolate cake at station 4 and nobody tells me, I am not feeling very appreciative.”

This discovery lead to her having a decision to make.  Was this “fight” worth the effort?  She remembers thinking “It’s just chocolate cake, right? Who am I to complain?” Then, as she thought through the issue, she realized that she had paid the same amount of money to be on the meal plan at her dorm as the students without disabilities had, and if they had choices about what they wanted to eat at meal times then so should she.  Access to menus was something she deserved.

Research taught her that having cafeteria staff email her menus was a reasonable accommodation under the Americans with Disabilities Act.  Armed with the facts, she went to talk to the cafeteria manager once again, as she had so many times before.  This time, however, she said: “If you don’t start emailing me menus consistently, I will sue you.”

Learning what the Americans with Disabilities Act required changed the attitude of all the staff members who worked in the cafeteria.  She had the menus regularly emailed to her from that point on.

Ms. Girma said that because of this experience she “was excited to make the world a better place for other students with disabilities.”

After graduation, Ms. Girma attended and graduated from Harvard Law School, and was recognized by the White House as one of their Champions of Change.  She now works as an attorney for the non-profit group, Disability Rights Advocates in Berkeley, California.

I was incredibly inspired by the accomplishments of this woman as she described this chain of events in her life.

The story she told had one question rolling around in my head long after the video was over.  It’s a question I would ask to the audiences I speak to, as well as my closest friends.

What is your chocolate cake?

What things are you missing out on because you don’t want to rock the boat?

Are you willing to settle for less than you deserve in the name of not making waves?  What will the personal cost for that be? Are you willing to risk it? How much better would your life be if you got all the things you deserved that were readily available to you?

Advocacy is no stranger to me, and I have had far too many people in my life tell me to appreciate what I have instead of fighting for what I want.

And all I can say is, I agree with Ms. Girma.  Coupled with a glass of almond milk, chocolate cake tends to be pretty darn tasty.

Posted in Ableism, Accessibility, Accommodations, ADA, Advocacy, Attitudes, changing perspectives, disability etiquette, Making Changes, What some people don't think about | Tagged , , , , , , , , , , , | Leave a comment

Stay Loud!

stay loud

For the last few years, I have routinely said that I didn’t think I would ever get a tattoo. It’s not that I don’t like them. On the contrary. Several tattoos I have seen are exceptionally cool. Rather, my hesitation comes from the fact that I didn’t think I would ever find an image or a phrase that I wanted on my body permanently. Then, about a year ago, I heard about the Semicolon Project. Because of my love of literature as well as my challenges with my psychiatric diagnosis, the thought of a semicolon tattoo seemed like a good choice. I wrote a blog post about it, but I never took the plunge.

As the concept of the semicolon tattoo spread and got more popular, something about its luster faded for me a bit. The image became somewhat common, and I have always been more of an “outside the box” kind of girl. So the idea of my getting a tattoo got put on the back burner inside my head.

***********************************************************************

About nine months ago, I was asked to share my thoughts about the importance of accessibility to a team of people who support a potential project in Lawrence, the city where I live.  According to the caption on a video about the subject made by Handbuilt Productions, “in 2014, Lawrence, Kansas won a $500,000 Art Place America grant for the artistic revitalization of East Ninth Street from downtown Lawrence to the Warehouse Arts District in East Lawrence.” In addition to fixing many issues that have the street in severe disrepair, (potholes and broken sidewalks and such) the plan is to put several pieces of sculpture and better lighting along a section of the street, along with making it fully accessible and essentially an “arts corridor.” One of the reasons I am so excited about this plan is because, if it goes forward, then I would be one step closer to having a completely accessible route from my driveway into the heart of downtown. That would mean I could get out and about in the community by myself, without the help of a caregiver. If I could decide that I wanted to go to some event in the community on a whim, without having to coordinate a ride with anyone days in advance, then the quality of my life would improve significantly.

Obviously, I really want this to happen, so I have provided testimony, voicing my support, to the mayor and the city commissioners several times, as well as been part of the video about the project.

It’s getting down to crunch time. The city commission is supposed to continue the discussion on July 12th as to whether or not to allow this project to go forward to the next phase. A friend of mine requested recently that I email all the city commissioners again, to let them know how much better my life would be if this project became a reality, and I did so.

The next day I received a reply from one of the city commissioners. Matthew Herbert supports the East 9th project going forward and his email response to me read, in part:

“Lorraine, I am so grateful to you for speaking up and being heard on this issue. Too many people look at this topic and narrow it to simply “art in infrastructure”. Rebuilding 9th isn’t just about art; It’s about building accessibility into the DNA of this town. I too support the East Ninth Project…”

He just gets it.

When I asked him if there was anything else I could do that would be helpful, he said “Don’t stop writing and don’t stop advocating. Your story is compelling…. there is no one in Lawrence that can listen to your story and walk away saying “I don’t much like Lorraine”. That makes you a very powerful asset to have on our side. Stay loud. ”

It was the last two words that struck me and settled deep into my soul.

Stay loud.

I really like the concept. It somehow seems to fit. That phrase could have so many different meanings in my life, especially as an advocate.

Stay loud. Let your voice be heard. Don’t sit at the back of the bus. Don’t let anyone make you feel inferior or take away your power. Speak kindly. Have clear boundaries. Practice. Get noticed. Be present. Don’t let the noise in your head overshadow what is in your heart. Do what is right. Keep going. Don’t fade into the background. Fight. Be confident in your convictions. Don’t tolerate any kind of mistreatment. Regroup. Don’t gossip. Stand up to injustice. Maintain your dignity. Don’t be afraid of the unknown. Participate. Make good choices and be able to back them up. Know why you believe what you believe. Work out conflict. Take risks. Refuse to settle for mediocre. Own your successes and your mistakes. Be exactly who you are.

You probably know where this story is going. At some point in the foreseeable future, I am going to get a tattoo. Those two words sum up many things that I am about, and that are significant to me.

Thank you for the reminder, Commissioner Herbert!

I never want to be obnoxious…

I always want to stay loud!

 

Posted in accessible routes, Accommodations, Advocacy, boundaries, can do, caregivers, curb cuts, Finding Your Voice, Mental Illness, overcoming challenges, people with disabilities, Philosophy, Tattoos, What some people don't think about | Tagged , , , , , , , , , , , | Leave a comment

The Issue Is Only…

legs not working picture

Picture it. Me, a seventeen-year-old recent high school graduate, ready to leave behind everything familiar, and looking forward to my future with equal parts excitement and terror. But that wasn’t going to happen for a few months yet.

It was early on a summer morning, and my parents had held a garage sale the weekend before. A few months earlier, my dad had gotten news that he was going to be transferred for his job, so we were about to move from a huge house in Houston to a small apartment in New York City. The purpose of the garage sale was to purge a bunch of stuff that would not be going with us.

One of the things that had been sold was a sofa, and the woman who bought it said that she would be back at the beginning of the week with some moving men to pick it up. On that summer morning the phone rang, and my mother told the woman that this was a fine day to pick up the sofa. “One thing though”, my mom said to the woman on the phone, “I have some errands to run at the time you are going to be here. My daughter will be here to let you in. She has cerebral palsy and walks with canes, so it might take her a few minutes to get to the door, but she will get there and can do anything that you need.” A few minutes later, after briefing me about the situation, mom was out the door.

When the doorbell rang a few hours later, I had no clue that I was about to experience something that I would remember for the rest of my life.

True to mom’s word, it took me a few minutes to get to the door. Longer than it would have taken someone who didn’t happen to have a disability. But “taking me longer” was the way I had always gotten things done.  When I opened said door, a very well-dressed woman stood before me. On either side of her were two men who could have easily been stand-ins for the Incredible Hulk.

The conversation follows:

Me: Hi, it is nice to meet you. My name is Lorraine. The living room is this way.

Woman: HI! WE. ARE HERE. TO PICK UP. THE SOOOO-FA!

Me: Yeah. Mom told me you would be coming. It’s in the living room.

They follow me. Then one of the moving men speaks up.

Moving guy: That sofa is pretty big and I am not sure it will fit out the front door, so we will probably have to take it out the garage.

Me: Okay, that’s fine. (and I turn to leave the room so I can hit the button that actually opens the garage door.)

Woman: (turning me back around so I am right in front of her.) THE SOOOO-FA IS TOO BIG. TO TAKE OUT. THE FRONT DOOOOOR. WE. NEED TO. TAKE IT. OUT THE. GARAGE….

Now let’s step back and get a little context here. I have had my cerebral palsy since birth. My family didn’t treat me any differently because of it and the neighbors and friends that I grew up with were used to my physical circumstances as well. I knew there were some people in society who were uncomfortable around people with disabilities, but at that point in my life I had not encountered many of them. I was also aware that the woman was only dealing with her discomfort; she did not have the intention of ruining my day. Lashing out at her wasn’t going to help any of us learn anything. All of these thoughts were swirling in my head as I was figuring out how to respond appropriately. But it turns out I didn’t have to. Someone else did it for me.

Moving guy: Ma’am, I think the problem is only in her legs.

Brilliant. Just brilliant!  I could not have said it better myself.

I would only edit it slightly.  Because I don’t see my disability as a “problem,” I choose to change that word to “issue.”

As I have moved on in my life there have been countless times I wish I could have folded up that moving guy and put him in my back pocket. His sentiment applies to so many situations.

To the radiology technician who was trying to figure out a reason for my symptoms and asked me if I “was actually capable of having sex.” Really? Lots of people with disabilities are in romantic relationships. The issue is only in my legs.

To the medical staff who talk to my caregivers in order to get information instead of addressing me directly. I know all the answers. The issue is only in my legs.

To the waiter who looks at whoever I am with and asks what I want to eat and offers us a children’s menu. I am an adult and I am pretty hungry. The issue is only in my legs.

To the doctor who asked me if I knew the last name of a counselor I had just told him I had been working with for years. There is nothing wrong with my memory. The issue is only in my legs.

As time goes on I am getting more assertive and I am getting better at addressing those things as they happen. And then there are other days when I draw strength from the moving guy, and I smile. If society can realize the same thing that he did, the world, in my opinion, would be a much happier place.

It’s true that I am not always at my best, but there is no doubt about it.

The issue is only in my legs.

Posted in Ableism, Attitudes, cerebral palsy, changing perspectives, communicaiton, communicating respect, CP, Disability and Relationships, disability etiquette, Good Memories | Tagged , , , , , , , , | Leave a comment

What Has More Value?

Popcorn and Movie Tickets

I don’t like discounted movie tickets. No, that isn’t accurate. I actually love discounted movie tickets. As long as they are discounted for everyone. In fact, I try to go to the matinee showing of a movie I want to see whenever I can, just so I don’t have to pay outrageous full prices. What I meant to say is that I don’t like movie tickets discounted for me simply because I have a disability. And that is what happened when I was in North Carolina over Spring Break visiting a friend of mine. My caregiver and I went to a movie late one night. She got a discount by showing her student ID. And the woman at the counter gave me a discount because I have a disability.

On the surface it was nice, and I don’t want to diminish the kindness the woman at the movie theater was trying to extend to me at all. She thought she was doing a good thing and I understand that. I just don’t care for the feeling I get when stuff like that happens. There is a cold prickliness that makes its way to my soul when someone waives the cover charge at the local venue when I go a concert. It’s the same feeling I experienced when I was visiting mom and dad during a summer break from college. We went to the park one lazy afternoon, and I noticed a guy was looking in my direction every few minutes. Then he would look away. After a while, he came over to me with a look of pity in his eyes. Without a word, he handed me several one dollar bills. He tried to walk away, but I stopped him. I gave him his money back.

Don’t get me wrong, until I draw my last breath I will advocate for the rules and regulations of the Americans with Disabilities Act. I believe wholeheartedly in ramps, braille menus and closed captioning. I find accessible restrooms and bigger parking spaces to be exceptionally helpful when I go out and about with my caregivers running errands or grabbing a bite to eat around town.

Those things make it easier to function, given that I am a wheelchair user and I must navigate the world differently than most. Accommodations like that level the playing field, so to speak, and give me the power to participate in society just like everyone else.

Discounting my ticket at a movie theater, on the other hand, sends me a different message. It says “You must really struggle to live the way that you do, and I am going to make your life a little easier by not making you pay as much to have fun.” That message is about pity, and it simply makes me ill. I know the people who do it have the best of intentions. I just get a bad taste in my life when I get the vibe that anyone believes my life is worse than theirs. Besides, if it costs everyone else a particular amount of money to see a movie or go to a concert, and I don’t have to be inconvenienced in order to participate, why shouldn’t I pay the same price as they do?

One night a few years ago a caregiver and I were talking about the kinds of music we like. A few days later, he told me that one of the bands that I had mentioned in that conversation was coming to Kansas City soon. But tickets were expensive. He wanted me to write to the ticket office and tell them I have a disability and ask if I could get tickets for half price so that he and I could attend the concert together. He was surprised that I was offended by the suggestion.

I explained to him that for all of my professional life I have advocated on behalf of people with disabilities. Whether I am speaking to a class of college students who want to be physical therapists someday or giving testimony to the Kansas Senate, my message is similar. I will tell anybody who will listen that, in my opinion,  people with disabilities should be treated just like anyone else.

And I know that if I am going to be taken seriously, it has to work both ways.  I have to say “no” to special treatment, no matter how well-intentioned it may be.

So I don’t like discounted tickets to the movies. Because my life is pretty great.

Getting respect from other people will always be much more valuable to me anyway.

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