The Funniest Question

Another area of my life affected by spinal cord injury is my relationships with the community as a whole. From lifelong friends to new acquaintances to total strangers, the effect of living in a chair on how others perceive and interact with me and I perceive and interact with them changed across the board. I thought it might be interesting for the readers to take a trip with me into the complexities of the human psyche and our fascinating social behavior patterns after last week's more medically focused posting. So have a seat, leave a few preconceived ideas behind and leap with me into the wonderful world of how we as a species connect to each other.

Before I was injured I was downright terrified of people in wheelchairs. To this day I honestly have no idea why. The only thing I can attribute it to is that people are generally afraid of what they don't fully understand... that, and I was probably coerced into far too many church Christmas caroling trips to nursing homes and convalescent centers as a kid. I don't know the exact moment that I realized I was now soundly planted on the other side of the "disabled" (I hate that word) fence, but I do remember it happening within days of being admitted into rehab. I made a pact with myself. I began to think about the effect my fear-based avoidance of those in wheelchairs must have had. Remorse over any pain I may have caused made me come to one conclusion. I determined that no matter what, I would not resent others for their fears or lack of understanding. That one choice has been one of the most powerful and practical steps towards recovery I have ever made. It has not been the easiest paradigm to manifest, but what it essentially paved the way for was a life less bitter and a heart less hard. I have seen it change lives in others too. Keeping this in mind, I will say that the level of fear and misunderstanding out there is through the roof! The media and Hollywood is not helping either. There is a very real pile of myth and misconception a mile high surrounding people in chairs and I hope in this posting I tear down a few stereotypes, make you think and hopefully giggle.

Myth #1: People In Wheelchairs Are Mentally Disabled
I know you're thinking "Oh c'mon, nobody thinks that!", but I will direct your attention to the well-meaning wait staff at various eating establishments who have asked those with me what I would like to eat. Then there is the parishioner from my Grandmother's church who leaned over my shoulder while I was eyeballs deep in a budget spreadsheet for an investment proposal and said, "Oh that's so nice that you have something you can do." I was really tempted to make her a popsicle stick house on Arts & Crafts Day and give it to her on Palm Sunday, but when I noticed the velcro on her shoes I realized she was trying to tell me that she too was one of the club. Secret handshake and all that. That was bad. I'm sorry. I repent. It is true however that much of the population equates loss of motor function or a wheelchair or a limp or even slurred speech with limited mental function and an inability to contribute to society.

I had known this to be completely false since my injury of course, but had it driven home in 2009 when I met someone who has become a role model of mine. While refining that very same business proposal that the uninformed woman unknowingly insulted me over a business contact here in New York said, "I want you to meet a friend of mine, his name is Rich Donovan. He has cerebral palsy and he's a former VP at Merrill Lynch." I was intrigued. I have known several individuals with cerebral palsy and the condition ranged from extreme to barely noticeable. I, in my own still narrow thinking was visualizing the latter. My first interaction with Rich was over the phone and it was obvious his speech was affected. The wheels of my mind started turning. I imagined this voice calling my Upper East Side penthouse at 8 AM to give me a report on the handling my multimillion stock portfolio. While I myself am working the phone often affords a level of avoidance when it comes to preconception. People don't necessarily know something is physically wrong with me just by hearing my voice and I have often hid behind that to maintain my confidence. I realized what this man must have battled. Then I met him. Rich has had many physical difficulties and has spent time both in and out of a wheelchair, but when he walks into a room, he OWNS it. I learned more in thirty minutes than several semesters of business school from this Columbia business school grad who has handled billions on Wall Street, sailed his sixty-foot yacht around the Caribbean, has raised a beautiful family and all while facing an entire economic system predicated on the concept of "No, you can't" with cerebral palsy. Rich, if you're reading this, you rock buddy.

What is a contributing member of society? What is limited mental function? Science has proven we use less than 10% of our total mental capacity and one of our leading minds is Stephen Hawking who is confined to a wheelchair and speaks through a computer. Does simply a full day's worth of physical work or full-time employment define contribution? There are an awful lot of farmers spending sun rise to sun down feeding bone meal to cows, spraying deadly chemicals on their fields and pumping manure into overflowing lagoons. Civil servants known by their other names as senators and congressmen have brutally demanding schedules yet they create slush funds to support pork barrel politics. I just found out that crowdfunding website Kickstarter.com had a banner day recently by raising $2 million to finance the comeback of Veronica Mars! Somebody define contribution to society for me please!

Everybody loves to makes jokes about the slogan "The mind is a terrible thing to waste" and of course there are those guys who snicker when a woman says, "I want a man who loves me for my mind." That's nice. What if everybody loved everybody else for their minds? Sound silly? The French philosopher Rene' Descartes penned the famous phrase "I think therefore I am." In the book of Exodus God says to Moses, "I am that I AM." If we combine these two statements with any logical thought a concept begins to form. It makes us ask ourselves if our capacity for thought is the very thing that makes us Divine, eternal beings. What if the ability to truly love each other is to recognize each ones capacity for thought and the very thing keeping us from thinking anything worthwhile is the lack of this revelation? Selah.

Myth #2: People In Wheelchairs Are There Because They Like It
"Your Honor, ladies and gentlemen of the jury I would like to submit into evidence the following..."

Exhibit A:
The family member who assumed Caleb was not trying hard enough in the rehabilitation process because he was not trying to move his legs or did not try standing up to "see what would happen."

Exhibit B:
The concerned church member who suggested Caleb was suffering from high levels of the chemical Aspartame in his system and that reducing its intake would help.

Exhibit C:
The family friend who recommended bouncing on a trampoline as a means of regaining nerve function.

I am not going to offer a rebuttal to each of these examples, but yes they are very true and very real and did/do happen. When they do I remember the pact I made with myself and while irritating at times I remind myself that many people say things out of compassion or at least empathy. What's interesting is that over the years I have learned that by and large people are trying to break the ice in the best way they know how. I would rather someone say something completely stupid and try to connect with me than avoid me or the situation all together. I have even found that if I engage them in a conversation and answer them patiently they will often see their own silliness and apologize. Many have gone on to become dear friends.

I am going to say something here that could be a bit controversial, but in today's culture we love heroes. TV talk shows, books and documentaries come out all the time about this person or that person who overcame incredible odds. Don't get me wrong, I love them too and we need more like that. Part of the purpose of this blog is to inspire others. However, every so often a story will come along where someone will have an accident, lose a limb or become terminally ill and say "This is the best thing that has ever happened to me." This one phrase has been so misconstrued by the media and viewing public it has sent an extremely confusing message about overcoming suffering to those needing it most. So much so that it often makes it difficult for those suffering to overcome, and those supporting them to relax what can potentially be some very limiting ideals. Everyone grows in their own way.

No-one in a wheelchair, with any kind of physical limitation or illness in their heart of hearts truly believes that it is the best thing that could have happened to them. I'll tell you why. We are not wired that way. We as humans face suffering and adversity as the force of limitation that produces growth, change and progress. We are wired to avoid it and find it undesirable for a reason. That reason is not to psychologically talk ourselves into believing that we like it and need it. It is to face it head on, admit that we quite positively hate it and then going about the often dirty work of fixing how we really got there in the first place. More often than not the understanding of what got us where we are is far more difficult to swallow than the actual results. The deepest courage is found in facing THAT part of ourselves. That is the part we must embrace. The accident, the illness or suffering itself is not the the best thing that ever happened to us. The best thing that can ever happen to us is to identify the root cause and take joy and courage in knowing the opportunity it presents to transcend. There is a difference.

My advice to anyone who has someone they know who is dealing with anything like I have outlined here is to simply be present. Be a friend. Listen. Don't sit in their presence thinking of the next thing you want to say. Don't buy them self-help books, teaching tapes, stories about how people who went through the same thing are now walking again and a bottle of the latest organic, holistic herbal remedy. Spend time with them. Everything else will follow.

Myth #3: People In Wheelchairs Are Creepy Shut-Ins
Hollywood isn't doing us any favors. The stereotypical image of the creepy neighbor in a wheelchair across the hall or the limping psychopath has been beat to death. My personal favorite is the famous scenario where the virile, athletic sexy hero or heroine discovers that the aforementioned neighbor is really truly wonderful, gives sage advice and is a shoulder to cry on when their asshole boyfriend or girlfriend kick them to the curb. We applaud and cheer because said hero recognizes what an amazing friend they have and celebrate their open, inclusive, life-changing revelation. We are thrilled because that poor shut-in now has such a devoted friend. Like white people who pride themselves on how diverse they are by counting their ethnic friends.

Many people in chairs have to choose their activities carefully and plan ahead. I've been carried up and down flights of stairs, transferred into airplanes, taken freight elevators, pushed through a foot of snow and rolled over beach sand. I have had dinner in friends' homes, used their bathrooms, stayed in their bedrooms, slept in hotels, and used their showers. I have been to concerts, plays, movies, art shows, parades, churches, beaches, bars and restaurants. Every single activity requires most if not all of the following... a phone call to ascertain where the entrance and seating is located... Are there any stairs? Where is the elevator? Is there a ramp? Where do I park? Is there an accessible bathroom? Will there be anyone to assist? If not, who do I need to bring? Do I need to arrive early? Then you factor in weather. It gets very cold where I live even for the average person so this is a serious obstacle. Pile on snow or freezing rain and you can tear up a wheelchair pretty quickly. Then there is the heat. I don't sweat so this can pose a danger. All of this planning and finagling can become tiresome and downright annoying so it can be much less stressful to dispense with it all together and wait for a more opportune time. Staying home can be boring, I do get a kind of cabin fever towards the end of winter, but staying home does not equal lonely. It equals time, time that not many people are blessed with and if handled properly can produce interesting results. So before you label me creepy I may just be waiting for the weather to change.

Myth #4: People In Wheelchairs Are Grumpy
Okay, this can be true. I'm going to talk to my brethren here a bit... guys and gals... get the damn chip off of your shoulder! The world doesn't owe you anything. The world doesn't owe anybody anything. The love you take is equal to the love you make. That ramp should be safer, people should be more sensitive, airlines should make it easier to fly and restaurants should make tables higher, but kill'em with a little kindness.

I have had people bump into me in public or block my path in a crowded room because they were looking up and not down. You would have thought they were scared I would sue them for every last dime. While I appreciate the respect, I'm not going to take your house dude.

I'm not going to spend a great deal of time on this one because it's fairly obvious. Relax. Both of you, those in chairs and those out.

Myth #5: People In Wheelchairs Don't Date, Marry Or Have Sex
This is by far the subject I get asked about the most. Everybody wants to know, "Can you have sex?" I actually get asked this by women more than men. Thankfully. The mechanics are definitely different and I'll spare you the details, but the answer is yes.

The difficulty for people in chairs lies not in the intimacy, but in getting there. Humans by nature are deeply programmed with the survival of the fittest instinct. Our immediate reaction upon encountering someone with a physical impairment is to asses it as sub-standard, and therefore not prime mating material. I know that statement will get some raised eyebrows, but its true. What is even more interesting is that by and large in my experience and in speaking to others in chairs it is easier for women in chairs to attract men than men in chairs to attract women. Women are incredibly compassionate and many will take exception to what I just said, but hear my theory on it first. As a society both sexes have a tremendous set of expectations placed upon them, but I believe women more so and I'm sure they'd agree. They are expected to find Prince Charming, preferably sooner than later, dance like Beyonce, cook like Martha Stewart, mother like Angelina Jolie, maintain a figure like J-Lo and possess the career drive of Michelle Obama all while getting everyone to church on Sunday. If she doesn't she's failing even in the eyes of her girlfriends who are under the exact same pressure. She's going to need all the help she can get and the cover of Esquire and GQ tell her that 6' 3", handsome, healthy, athletic and established are going to provide all the support she needs. Don't laugh, she had Ken in one hand and Barbie in the other since she could walk. This tremendous pressure to conform is changing, but it is still very strong in our materialist society. This is not to say women yield to pressure more than men, but that we are grossly out of balance. The dudes definitely get their due. I know a guy who was put off by the length of a woman's second toe. Need I say more?

While a man or woman may meet someone in a chair, they may find them funny, smart, attractive and be interested, but they can become afraid. What if they can't make love? What if they can't have kids? Will I have to take care of them? Will their family or an aide be around all the time? Then the big one... What will people think? I had a woman say to me once, "I would probably find you attractive if it wasn't for your puffy belly, it's kind of weird!" At the time my feelings were hurt, but looking back at least she was honest. People in chairs go through the same mental processes. I'm ugly. Will they think I'm weird? What will they assume about me? How will I protect myself if they hurt me? Breaking the ice can be daunting enough without the added baggage.

Relationships are tough. I couldn't disagree more. Fear, rejection and resistance is tough. Love, reception and acceptance is easy and should be the norm. Communication is the issue and we must maturely face this. If we love someone then why should we make them fit into our box of perceptions? Why should the entire relationship be forced into what everyone else deems as "normal" if it is built upon love and respect?

The flip side to this coin is that sometimes people do try to take advantage. Note to the reader: People in wheelchairs are not desperate for attention and fair game. I have had women say to me, "Would you find me attractive if you were not in the wheelchair?" Uhm... after that, probably not. The relationship usually ended there and then. People in chairs do not want or need to be cared for. That's why they have aides if they need them. I need an equal partner, not a nurse and telling me you "just want to care for me" is not sexy or romantic, it's annoying and downright demeaning. Yes, a relationship can grow and you do things out of love, but it's no way to start. Doomed to fail from the start.

So What Do You Do?
If I could sum up this posting it would be communication. I entitled it The Funniest Question because I often catch myself thinking that about something someone asks me in regards to the wheelchair. Funny in this case meaning odd. I find though that I am learning to like the questions. It's a start, an opportunity. A chance to connect. To communicate. If I lay down my preconceptions maybe they will put theirs aside as well.

So if you're reading this and nervous on how to relate to someone in a chair, relax, take a deep breath, pull up a chair, sit down, smile real big and say, "Hi, my name is..." then just wait for the response.

"Interestingly, from an identity standpoint, what does it mean to have a disability? Pamela Anderson has more prosthetic in her body than I do and nobody calls her disabled."
-Aimee Mullins (Double amputee and Olympic athlete)

Thanks for reading...

Comments

  1. I really enjoyed reading this post Caleb. It's nice to see things from your perspective. My little sister has cerebral palsy and I can tell you it was so hard growing up watching how people looked at her and treated her. There were so many times I would get so angry at people for being callous and sometimes downright cruel. I couldn't tell you how many fights I would get in or even suspended off of school buses defending her. As I look back I think sometimes I may have embarrassed her by trying to protect her. It isn't an easy road but I think you are definitely headed in the right direction. Looking forward to reading more of your posts:)

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