Thank God It’s Today!

coach-cripps-4Icy prickles of anxiety flooded through me with such intensity that I was sure I had just swallowed Alaska.  My health teacher, who was with me for moral support, had assured me that the man I was about to meet was very nice, but at that point, I knew him only by reputation.

Our head high school football coach had more wins in his career than any other coach in our school district, and most Texans tend to treat high school football with the reverence of a religion, so when I entered his office in my wheelchair that day I felt a little like Dorothy right before she met the wizard. My palms were sweaty, and for a few minutes there, I would have bolted if only I had the ability.

Then he entered the room.  “Hello,” he said, with a warm smile. His voice was gentle, soothing my nerves like hot tea on a sore throat, but I hadn’t quite gotten over my fear. “How can I help you?” he asked as his eyes tried to meet mine.  I looked at the floor.

“Hey Coach Cripps,” I whispered as my voice shook uncontrollably.  I don’t know if you know me, (why would he?) I’m Lorraine.  I just joined a sports team for people with cerebral palsy, and I want to do really well, but I am not sure how to work out effectively.  I was wondering if you would consider writing out a list of exercises that I could follow sometime in the next few weeks, so I have a template as I start to work out.”  All my words came out in a rush, like exhaling after holding my breath under water, and my anxiety started to swell again.  He was the HEAD football coach.  He had to be incredibly busy.  Maybe asking for his help was an exceptionally bad idea. What had I been thinking?

“I would be happy to help, Lorraine,” he said without the slightest hesitation. “Let me see what I can do…I’ll get back to you soon, okay?”

“Thanks, Coach Cripps,” My voice was a tad bit stronger now.  “I would appreciate any suggestions you have for me.”

The next day, after Coach Cripps presented me with a complete workout plan, he asked: “Lorraine, do mind if I go through your workout with you as you are doing it?”

I was stunned.  “Coach Cripps, that would be amazing.  Thank you.”  I didn’t know it then, but he would work with me as I trained at least once a day for the remainder of my high school career.

We started in the weight room.  Because I wasn’t very strong when we started, my efforts, in the beginning, didn’t produce stellar results.  As he figured out the best weight for me to start with and assisted with the machines I couldn’t reach, he would motivate me as well, offering gentle persistent encouragement.

“C’mon Lorraine, three more reps.  I know you can do this.”

I didn’t want to disappoint him, so I kept going.  Over the next few months, my strength, coordination, and flexibility all improved.  As a result, my confidence blossomed.  After a while, Coach Cripps made sure that I worked out with the football team.  That meant my social life improved as well.

Eventually, we hit the track, my passion was the 400-meter dash. There was something comforting for me in the completeness of circling the track in its entirety. Just like with weights, though, I didn’t start well.  Having only used my wheelchair for function up until then, it was Coach Cripps who taught me how to position my arms so that I could get the most power out of every push, and where to put my hand on the rims so that I could reach back quickly for the next rotation.  Over time, all of that effort translated into my challenging the world record in the 400-meter dash.  When I was selected to represent the United States on the Paralympic team in the beginning of my senior year, my plan was to break that record and take it home.

One day I was out on the track and I was struggling.  The sports team I was on had raised enough money for several of the athletes to get new track wheelchairs, designed specifically for speed.  I had mine for just a few weeks and it was totally different from the wheelchair I used in everyday life.  As I practiced that afternoon, my times in the 400 meter were worse than they had ever been.  My frustration hit its limit, and I completely broke down.

Coach Cripps was on the practice field next to the track with the football team, but he had an eye on me the whole time.  When he came over to me and helped me out of my track chair and into my “everyday” one, he said: “Thank God it’s today”

It was a phrase I had heard him say often, a reminder to appreciate every minute you have and make the most of it.  But I was confused about how it could possibly apply to my current situation.  My not being able to push my wheelchair around the track was nothing short of a disaster.  It meant that I wouldn’t ever break that record.  Couldn’t he see that?

“If you didn’t have days these types of days,” he explained, “you wouldn’t appreciate the good ones, like when you shave a second or two off your best 400-meter time, nearly as much.  Days like today tell you exactly what the challenges are so that you can find exactly the right solutions to fix them.  Pay attention.  Be grateful.  As far as getting used to your new track chair goes, you just need to adjust.  It always comes with getting new equipment.  Just give it some time.”

He was right.

In the next few weeks, I continued to practice and make adjustments.  The result was that my track chair started to work for me and not against me.  I was closing in on that world record, but it was not to be.

A little more than a month before we were supposed to leave for competition, the games were canceled due to terrorism.  Getting that news was an enormous disappointment; everything I had worked so hard to accomplish for several years disappeared in an instant.

The weeks that followed were spent trying to find my footing and figure out what else I wanted to do with my life.  The words of Coach Cripps often echoed in my ears.  After a while, I came to the conclusion that if the games had not been canceled, I would not have spent so much time thinking about what held my interests besides sports.  I went to college a few months later and focused on developing my writing ability.  I currently write a blog that I love and am also working on my first book.

Thank you, Coach Cripps.  And Thank God it’s today.



Posted in Accommodations, Beginnings, can do, Coach, Disabilitiy, Disabled Sports, exercise for people with disabilities, Following Dreams, Good Memories, Helping people with disabilities, Heroes, high School, Paralympics | Tagged , , | 1 Comment

Then, I Can Hope…

josh-blueWhen I answered the phone on that Sunday evening, the person on the other end was one of the last I expected.

“Lorraine, this is Charlie Y.”

My intrigue grew. This man is one of the nicest people on the planet. I’ve known him for years now, he happens to be the doctor that monitors my sleep apnea. We had seen each other at my “check in” appointment a few months back. At that time, he asked me about my writing. When I told him that I had been fortunate enough to have had several of my stories published in Chicken Soup for the Soul books, he said he would like to read one. So, about a week later, I signed a copy of one of the books and I asked one of my caregivers to drop it off to his office. It was a nice gesture I suppose, but I really didn’t think much about it.

“First, I wanted to that you for the book,” he said, “I really enjoyed it. Secondly, my wife and I have season tickets to the Lied Center.” (a theater in town that is part of the University of Kansas. They have concerts and various performances throughout the year. I had only been there once.) “Do you like Josh Blue?” Charlie Y continued, “I am on call this week and cannot attend his show. Would you like the tickets?”

I was stunned. Oh. My. Goodness.

Josh Blue is a comedian that I have long admired. In 2006 He won “Last Comic Standing.” He also happens to have cerebral palsy (like me) and he uses his disability as material for his act. The end result is nothing short of hysterical.

These days I am severely shorthanded when it comes to caregivers and the amazing one that I have could not go with me. Since I really wanted to go to this show, I did something I wouldn’t normally do. Making myself pretty darn vulnerable, I put the following post on Facebook.

Hey, Lawrence Friends: Last night I got an amazing offer. A friend of mine (who also happens to be one of my docs) offered me two free tickets to see Josh Blue at the Lied Center this coming Wednesday night. Josh Blue is a comedian who happens to have cerebral palsy (like me) and he uses his disability as material for his act. I think he is hysterically funny. My caregiver cannot go, and I am looking for some company so that I can see the show. This is an opportunity I would rather not miss. Anyone interested? Please let me know. Thanks!

I didn’t know what would happen. I had done my best, and then I hoped.

The response was great. Several friends from across the country were supportive and told me in messages that they would love to go if they lived closer. Then my friend Beth said, “I would love to go with you, Lorraine, if you don’t already have a date.”


After a quick dinner downtown, Beth and I arrived for the show. I knew I would be entertained, and Josh Blue did not disappoint.

He said things like “I was walking down the street the other day and a woman I have never met before told me that it was inspiring that I was out in the community. I said ‘I am going to the liquor store. Are you still impressed?'”

There was a young man in the audience who I am guessing had cerebral palsy and was also on the autism spectrum. He kept engaging with Mr. Blue during the show, and the comedian was nothing but gracious. After a while, he said, “Hey man, is our bus here yet?” As someone who rode the short bus throughout the years of my education, the intensity of my laughter at that joke almost caused me to fall out of my wheelchair.

At the end of the show, there was a question and answer session. People in the audience were asking Mr. Blue about various aspects of his life and his experience.
For the last question, someone asked, “How do you think what you do changes the perception that the general public has toward people with disabilities?”

My ears perked up.  I paid attention.  His answer made me pause a bit. He said “I do what I do to make people laugh. If that changes the perception that some people toward those with disabilities, that is great, but that is up to them, not me.” The concept resonated deeply with me.

Often I have said that I believe on of my purposes in life is to do my small part to respectfully break down barriers between people with disabilities and those without disabilities. Josh Blue made me realize that, just like getting a ride to his show, the outcome isn’t up to me.

What I can do is present people with information that I have to share. I can answer questions and I can talk about my personal experience. But whether or not my efforts change other people’s perception of people with disabilities is on them, not me.

I can do my best. Then, I can hope.

Posted in Advocacy, communicating respect, compassion, Disabilitiy, Disability Blogs, disability humor, doctors, inclusion, Laughter, Making Changes, negative perceptions | Tagged , , , , , , | 3 Comments

Hacking It

kitchen-tips-and-hacksMany years ago…

I was fired from the first “grown up” job I had. It’s not something I am either proud of or talk about often. The reality is that I just didn’t know what I was doing. Life circumstances prevented me from working at McDonald’s as soon as I turned sixteen. Consequently, I didn’t learn the same skills at the same time or at the same rate that my peers did. So when I started that job fresh out of grad school, I knew nothing about office politics or strategies to get along with my coworkers.

Part of the problem was that my psychiatric issues were present in my life, but I did not have a clue how to work to make them better at that point. My emotions were erratic, and I had horribly negative reactions to stress. All of those things cost me my employment. And some self-esteem.

Just a few months later, I was home alone on a weekend afternoon, and I started getting hungry. The thought crossed my mind to wait for a caregiver to arrive to help me make some food, but I quickly dismissed it. What could possibly go wrong? I knew my way around the kitchen. Assessing the contents of my refrigerator, the most appetizing thing to me was some seasoned beans that were leftover from dinner a few nights before. I knew there was some rice in my pantry and it seemed like the perfect lunch. I decided I would make the rice first.

But I couldn’t reach a pot to cook the rice in. No problem. The box of rice had microwave directions and I could easily reach the Tupperware. So I mixed up the water, rice, and salt in a microwave-safe bowl. I put the whole thing in the microwave and I pushed the start button. All was going according to plan. The microwave signaled that it was done cooking the rice, and it had stopped in such a way that the bowl of rice was in the back of the microwave, a little beyond my reach.

I thought I could do it without incident. I was wrong.

When I reached into the microwave to get the rice, the bowl tipped forward, spilling nearly boiling water all over my lap. The severe second-degree burns had to be redressed every day and took several months to heal.


I work from home at a job that I love. Whenever I have a new writing assignment, I check in with my boss to see the kind of angle he is interested in and if there are specific things he wants me to do. Over the years I have learned that asking all kinds of questions up front leads to less overwhelm in the midst of a project. And the more I feel like I know what I am supposed to accomplish, the easier it is to get the story done.

Several days before I interview anyone, I come up with a list of questions specific to them and what they do. There are also some questions I ask everyone. At the time of the interview, I bring the list as a “cheat sheet” so that I never feel like I am unprepared like I routinely did at my first job out of grad school. That is my employment “hack.”

When I get overwhelmed, I utilize breathing and tapping techniques that I have learned through the years with the goal of my emotions staying on a pretty even keel. I like to call the techniques that I use my “emotional hacks.”

I make pasta about once a week. Usually the corkscrew kind, and that is by design. If I don’t want to wait for a caregiver to help me, I wait the allotted time for whatever I am cooking to be done. Then, instead of using a colander, I use a slotted spoon to get the pasta into another bowl. If there are still a few pieces at the bottom of the pot, I do pretty well getting them with a fork, because they are corkscrew and not hard to handle like spaghetti would be. I don’t empty the pot of water until the water has completely cooled down. That way, I am not even remotely in danger of burning myself.

When some food that I put in the microwave is done, I look to see if I can reach it. These days my microwave has one of those glass turntables in it.  If the food happens to be way far in the back, I close the microwave door and press the button for 30 more seconds of time. It usually takes about ten seconds for the food to come to me. Those are some of what I affectionately call my “disability hacks.”

Some days, because of the things I can’t do for myself, my life can be pretty frustrating.

In the grand scheme of things, though, I can usually”hack” it.

Posted in can do, caregivers, choices, Disabilitiy, Emotional Freedom Technique, Employment, Mental Illness, overcoming challenges, What some people don't think about | Tagged , , , | Leave a comment

I Want to Buy New Socks!

socks-2There are holes in all of my socks. And I am not going out to buy new ones.

As I have said many times previously, I am affected by spastic cerebral palsy, which means, among other things that there is a significant amount of spasm in my body, and that makes some things difficult. Back spasms sneak up on me on a regular basis, and often I have to stop what I am doing and take a deep breath in order to let the spasm pass. The spasm thing also means that I don’t have much balance, and when I am upright I need to utilize a grab bar in order to be steady.

Probably the most significant thing about the spasticity within me is that it means that I cannot independently bend my knees. Turns out, knees need to be flexed in order to crawl, or get back into a wheelchair from the ground or to get in and out of bed, and lots of other things that most people don’t think about.

So, if I currently want to do any of those activities by myself, in a word, I am screwed.

Several physical therapists and other medical professionals have told me for years that spasm caused by cerebral palsy tends to increase with age, and that my body would age faster than the bodies of those without my particular disability.

Based on all of that feedback, I simply thought that was how things were going to be until the end of time. So, when I want to move my legs on my own, I have learned to grab my socks in order to get some leverage. I can’t bend my knees, but I can grip my socks to get my legs to move how I want to. On a good day, the system sort of works, but because socks were not designed for this particular purpose, there are holes in every pair that I own. Go figure.

Several years ago, in 2007, I had the honor of being crowned Ms. Wheelchair Kansas. One of the highlights of the year was flying to Bethesda MD to participate in the Ms. Wheelchair America pageant. Doing so was an amazing experience. Phenomenal people were there, and we spent a week bonding and being empowered by each other. A lasting benefit was that I became part of the Ms. Wheelchair America family, a sisterhood that full of women who truly understand.

A few years after I participated personally, I found out that there was a new product at the MWA pageant that the contestants were encouraged to try. The Physical Movement Therapy Device by a company called Flexiciser. From the pictures online, I could tell that when a wheelchair user rolled up to this machine  and got their feet strapped in, turning it on allowed both arms and legs of the person to go through a full range of motion simultaneously. According to their website:

“The PMTD™by Flexiciser is a versatile, self-operated therapeutic device for patients who are mobility-challenged. It is specifically designed for the simultaneous movement of all four limbs, no matter how compromised, and allows the mobility-challenged an integrated means of improving their health, both physically and mentally.”

From the moment I watched the video online, I was fascinated. And the more research I did, the more I was convinced that, over time, this was the device that could help me relearn to bend my knees. And my bending my knees means less dependence on caregivers. And that would rock. Beyond measure.

The website quickly let me know that the price was well beyond my means, but one of the things my disability has taught me is how to look outside the box. One day, I went on eBay and learned how to do a continuous search. I typed in the word “flexiciser” and signed up to get an email whenever somebody had one to sell. Then I waited.

A few months went by. Then, on a random Wednesday morning, while I was checking email, I saw it. A message from eBay…I contacted the seller, a very nice guy who was willing to negotiate with me.

I own a Flexiciser.

Using it consistently over the past few years has been somewhat of a challenge because I cannot use it by myself. Whenever my legs are strapped into the machine, the front of my wheelchair raises up slightly, and I need a caregiver to go behind me and hold on to my chair in order to provide counter-balance so I feel safe. As long as a caregiver is with me, the full range of motion feels fantastic. A mirror is in front of my legs as I use it so that my brain can see me bending my knees and my body used to the motion again.  I briefly worked with a neurophysical therapist who liked to say “the brain can’t heal what the brain can’t see.”

It has been about six weeks now that I have been using it on a daily basis. My legs aren’t as tight and moving has become a bit easier. I am prepared for daily sessions over the course of many months before I see significant progress in my ability to bend my knees. But I am hopeful.

Eventually, I am convinced that I will even be able to go out and buy some new socks.


Posted in CP, exercise for people with disabilities, Health, Ms. Wheelchair America, Ms. Wheelchair America pageant, Ms. Wheelchair Kansas, MWA, What some people don't think about | Tagged , , , | Leave a comment

Silence Can Be Bliss…

silence-is-blissIt was the beginning of June, an extremely hot day this past summer. My caregiver Michael and I had spent the afternoon, as usual, running errands and doing necessary things around the house like cooking and laundry. There was about half an hour left in his shift when it started. First, a slow, “what was that noise?” kind of buzz, and then gradually an incessant beeping that eventually felt like it was banging against my brain. One of the smoke detectors in my house had a low battery and apparently wanted the world to know it.

Michael got a step ladder out of my shed and spent some time going around to each one, trying to determine which was upset. After a few minutes, we found the button to reset the detector, it is on the ceiling in my office, but the quiet only continued for about five minutes or so before the whole sequence would start again. Michael had an appointment after work that day, so he spent his last few minutes searching the house for something I could use as a stick to reach the button on the ceiling, and hugged me with compassion before he walked out the door.

After Michael was gone and a few unsuccessful attempts to hit the button in just the right place, I called Bud, the guy who has mowed my lawn for the last several years. Like Michael, he has taken exceptional care of me.

Even with his leg in a brace, he cheerfully changed the battery in the smoke detector. We thought that was the problem and it would be a relatively simple fix.The thing is, even the new battery didn’t help. All the smoke detectors in my house are connected, and when one makes noise, they all follow suit. Every few minutes the totally obnoxious beep would start, and I got to the point that I wondered if it was ever going to stop. When it had lasted for several hours, it felt like that noise had all the power and was steadily gaining strength. I swear there were a few minutes that night when it was almost laughing at me sarcastically. All my defenses were down and I just wanted to crawl into a hole because I had almost become convinced that was the only way I would be able to get away from all the noise.

Ultimately, my amazingly cool handyman, Travis, dropped everything he was doing that evening and came over. He was able to totally disconnect the system.

Ahhh. Silence can be absolute bliss.

One of the disabilities I struggle with is a psychiatric diagnosis. For me, that means that my emotions often tend to be out of whack and I can get easily overwhelmed. So I work hard to manage my symptoms in various ways in order to keep everything on an even keel.

For the past couple of weeks, I have been in a tailspin. I have been working through some pretty intense issues personally. Additionally, without going into detail, I have interacted with several people in recent weeks who don’t seem to understand me and do not seem to be taking me seriously. Trying to make my voice heard has taken its toll, and dealing with everything that has piled up all at once has worn me out.

A few days ago the noise in my head got so loud it felt like it was banging against my brain, and I felt powerless to even turn down the volume. All I wanted to do was crawl in a hole in an effort to get away from the slow buzz that gained steam and gradually became the incessant beeping that was invading my thoughts with a vengeance. Make it stop. Make it stop. Make it STOP!

My support system is amazing. Whenever I need to reach out, there are really good people in my life who are happy to help me try and “take the batteries out’ when I am overwhelmed and going through a hard time. Most often, though, when I am in that state, I try to keep to myself. Being overwhelmed with emotion typically isn’t pretty and when I am there it is not something I can easily explain.

So these days I work with a professional coach who is helping me  break down the thoughts that ignite the voice in my head. The process isn’t easy, but the end goal, as you might imagine, is to disconnect the whole system and start again, with kinder and gentler vocabulary, and tools to turn off the negativity more quickly. And I am willing to work hard to do that.

Because I have learned from experience that silence can be absolute bliss…

Posted in Mental Illness, Psychiatric Diagnosis, Starting Over | Tagged , , , , , , | 2 Comments

Empower Me.

empower-meOur greatest fear is not that we are inadequate. Our greatest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous?

Actually, who are you not to be?

You are a child of God.

Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. You were born to manifest the glory of God that is within us. It is not just in some of us, it is in everyone. As we let our own light shine, we unconsciously give other people permission to do the same.

As we are liberated from our own fear, our presence automatically liberates others.

Marianne Williamson

It has been several ago now, but I remember the day well. I had gotten up early to get ready to go to the capitol building in Topeka. Shannon Jones, the then director of the Statewide Independent Living Council of Kansas had asked me to provide testimony about a potential program that would enable people with disabilities who wanted to work the opportunity to do so without the risk of losing their government funded caregivers. The program made sense to me. I require caregivers on a daily basis to do fundamental things like dress and do my laundry. I knew I wanted to work, but couldn’t unless I had the support of my caregivers. My working would allow me to earn a paycheck and pay into the system that provided me so much support. I saw it as a win-win for everyone. So Shannon invited me to tell my story to Kansas senators and representatives who were unsure of the need for the program. I was excited about the potential good things that could happen in my life if this program came to be.

My caregiver was late that morning. Very late. I found out later that she had forgotten what I was doing that day and so the adjustment in time for her caregiver shift had slipped her mind. As I was waiting, I was frustrated. The day was no different from any other day in terms of what I could and could not do for myself, but because I did not have the support that I needed at the time that I needed it, that day it hit me hard that I can’t drive and I can’t put on my own socks and shoes.

I felt less than. I felt inadequate.

When my caregiver finally arrived, we raced around the house  like mice in search of the last piece of cheese to get me ready and made it just in time for me to catch my ride.

When I got to the capitol I was nervous and when I found Shannon she could tell. I was frantically going over the three pages of notes I had tried to memorize and was failing miserably. The fear of screwing up my testimony had me almost paralyzed. I couldn’t think. I couldn’t focus. Shannon got the vibe

She sat down next to me and said “Lorraine, you communicate well and you have a great story. You want to work and the program we are advocating for  would enable you to do so. Just go talk to the senators and representatives on the committee and tell them who you are.”

With that, she took my notes away from me and announced that I was speaking next.


As soon as I started talking, I felt more comfortable. I told that committee all the ways that program could make my life better and that I didn’t see a downside. I asked to be able to pay taxes. I asked to be able to contribute in that way. I told them that my ability to earn a paycheck would do wonders for my self-esteem because I wouldn’t feel like I was taking from government programs all the time. I told them I felt what I had to offer was valuable. I told them I wanted to work.

When I was finished, Shannon told me I had done a really good job. That made me smile.

On the way home I realized that I could share my story and be a voice for other people with disabilities, and feel powerful doing so.  In fact, my platform as Ms. Wheelchair Kansas 2007, was “Use Your Power!”

In the years since on my blog and in my other writing I have tried to do just that and hopefully, I have made an impact and challenged some negative perceptions in the process.

I have heard it said that with power comes responsibility.

Empower me.

Posted in Advocacy, blogging, changing perspectives | Tagged , , , , , | Leave a comment

I’ll Do It On Purpose

stella-young-quoteA few months ago, I wrote a purpose statement for my life.  It was an exercise suggested in the book “The Success Principles” by Jack Canfield.  He is a man I greatly admire for many reasons.  As one of the founders of “Chicken Soup for the Soul”, I kind of feel a connection to him because I have had eight stories published in those books so far. He also regularly uses a technique that I like called tapping (more about that here) And, if memory serves me correctly, I think he holds the Guinness world record for the author with the highest number of books to be on the New York Times Best Seller List, with something like a total of 47 books and counting.

When I heard that, the “author who has written a bestseller wannabe” in me was wicked impressed.

So I was intrigued when I came across this book he wrote about success.  In the first few pages he talks about the importance of having a purpose statement because the theory is that if you want to be successful in life, you have to know what your purpose is.  And that way, you can make sure that all your efforts along the way to success are aligned with your specific purpose.

That concept made sense to me, so after thinking about my passions and what I want to achieve, I came up with the following personal purpose statement:

“My purpose is to use my passion and communication skills to encourage, educate and empower people to respectfully break down barriers between people with disabilities and those without disabilities.”

At the core of my being, I believe everyone should be treated as equals.

Last night I posted a video to my Facebook page. In the video Dr. Frances Ryan, a wheelchair user, says we need to stop calling people with disabilities inspirational because doing so portrays them as something other than human.  She discussed how much she hates “inspiration porn” which is, according to the late Australian activist Stella Young “the misplaced admiration of people with disabilities because of their disabilities.”

I agree with the sentiment and said so when I posted the video.  The comments that followed led to a thought-provoking discussion.

What I found the most interesting was that my friends with disabilities were similarly put off by the word “inspiring” and there were a few of my friends without disabilities that didn’t seem to understand why.

My favorite comment was from my friend Lindsey, who happens to have Spina Bifida.  She said:

“My disdain for inspirational porn is that things that should be normal are “inspirational” when someone with a disability does it. I’m an inspiration for going to work. How is that different than my nondisabled counterpart going to work? To me, it implies I’m not expected to be able to work just because of my disability. So really the “you’re an inspiration” is a passive aggressive way of saying I don’t think disabled people can be normal.”

On this issue, Lindsey and I are on the same page.  Now don’t get me wrong.  In some cases, I am flattered when someone calls me inspirational.  But I want it to be specifically about what I do, instead of their assumption about what my life is like.

For several years one of my passions was wheelchair ballroom dance, and several times my partner Brandon and I were able to perform at various competitions.  On one such occasion, the guy who was filming all the performances asked me if he could put the video of one of our dance routines on his business web page.  I agreed.

A few days later, I went to the page and looked for the video.  It was there, and the caption read “I thought I had problems…” and went on to say what an incredibly inspiring performance our routine was.

The whole thing made me feel very patronized and “patted on the head.”

I know he had the best of intentions.  He, unfortunately, missed the point.  I dance because I think it is fun and it is important to me that people with disabilities be portrayed from a position of power, not pity.

I emailed him and let him know that my life was pretty great.  He took the comment down.

The pilot Chelsey “Sulley” Sullenberger, who landed a plane in the middle of the Hudson River did something inspiring.  Because of his efforts, people lived that otherwise would have died.

There were hundreds of inspiring acts in the aftermath of the terrorist attacks on September 11th, 2001.

There are also tons of examples of everyday inspiration, like when someone receives a kindness and pays it forward.

On several occasions, I have made this point.  My life can be summed up pretty easily.  I wake up every morning, have a caregiver help me get dressed, eat an English muffin and go about doing what I have to do for the day.  I don’t consider any of that inspiring.  I do what is necessary to live my life simply because the alternative would suck.

If someone watches a dance video of Brandon and me online and they are moved or inspired, that is awesome. If someone reads something I wrote and tells me that something I said made them see a situation or circumstance in a different way, and the writing inspired them, then that is cool.

What I am put off by is when someone sees me doing something they routinely see people without disabilities doing and call me inspirational because they don’t expect it from me. Or when someone calls me inspirational when they don’t know anything about me other than my disability.

Every few days I review my purpose statement and I make sure the things I am doing are congruent with the things that I want. At the core of my being, I believe that everyone should be treated as equals.  That is never going to happen as long as there are people who are inspired just because I am employed.

Sometimes people tell me that the specific things that I do have inspired them in some way, and on some days that is what keeps me going.  So for as long as I can I will continue to use my voice to write and advocate in ways that potentially empower people with disabilities and those who care about them.

And I will do it on purpose.


*Below is the video mentioned in this post.





Posted in Ableism, Attitudes, changing perspectives, communicating respect, disability etiquette, Emotional Freedom Technique, Following Dreams, Get To Know Me, negative perceptions, What some people don't think about, wheelchair dancing | Tagged , , , , , , , , , , , , | 4 Comments