Sunday, June 26, 2011

Supportive perspectives

Years ago, when I first started work at Access Living, I had lunch with my new boss. While she ate chicken wings, she gave me some history of the organization, talked about her own experience as a person with a disability, and gave some context to the disability rights movement. What I remember most is what she said about the independent living movement. And it isn't the events, the issues, or the people of the movement that I remember most. It is the perspective through which the parties involved in the independent living movement approached issues and events. The lunch with my new boss was the first time I heard the term 'Independent Living Model' used. The Independent Living Model is a way of approaching challenges to independence faced by people with disabilities. Traditionally, the responsibility for navigating barriers to independence was placed on the disabled person. It was up to the person with a disability to change in order to achieve independence. This way of thinking was called the Medical Model. The Medical Model meant that the disability needs to be treated in order for the individual to navigate barriers and achieve independence.

The Independent Living Model didn't change the barriers faced by people. Whether it's Medical Model or Independent Living Model, the barriers are the same. But the new model changed the way people viewed the barriers. With the Independent Living Model, instead of disability being viewed as something to be fixed, disability is viewed as a natural part of life that can't necessarily be changed and that will impact everyone at some point. With Independent Living, rather than change the individual in order to achieve independence, one must change the physical barrier.

When I first learned about the Independent Living Model, my eyes opened in a dramatic way. The new model gave me a new perspective through which to look at everything that had happened to me as a person with dwarfism, and everything that lay in front of me as a person with dwarfism. I remember trying to bring as little attention as possible to my physical difference in an effort to fit in. Sometimes, if I needed something, some sort of accommodation, I wouldn't ask for it, thinking that an accommodation request would just highlight my differences, and thinking that it was up to me, without an accommodation, to figure things out. Of course, I did have some accommodations. Pedal extenders helped me drive. My parents equipped our house with stools. But whenever possible, I avoided accommodations. The new model taught me that it's perfectly acceptable to ask for accommodations.

More important though than any physical challenge and accommodation, the Independent Living model helped me view social barriers through a more productive filter. All people with dwarfism face social stigma, in so far as we have to deal with situations and with people that are not accepting of physical difference. Today society seems to be embrace differences better than it has in the past, but people with dwarfism continue to face difficult social situations.

In the past, I interpreted the situations as a fact of life. Intolerance comes with the territory I thought. It was up to me to deal with it and fit in as much as possible. The Independent Living Model helped me process those situations differently. Today, I interpret the situations not as my problem, but as a problem that stems from lack of awareness, ignorance and fear of difference. I still have to work hard to make the situation better, but it isn't up to me to change, and to fit in. What I need to do is change attitudes, raise awareness, and empower others to embrace difference.

I still have to face the situations today, and I often get upset when I find myself in a situation where someone else is intolerant of my difference. But in the long run, the situations are much easier to deal with when I identify the problem not as my failure to fit in, but as the other party's failure to embrace diversity.

These days, I am reminded of that original introduction to independent living by all of the initiatives around bullying. Similar to independent living models, which takes the issue outside of the individual and puts the responsibility for change on the community, anti-bullying initiatives put the responsibility for change on the broader community.

Many anti-bullying initiatives developed around the country deal specifically with schools and students, but I think the issue goes outside of schools for all of the marginalized communities the measures are designed to protect. I am excited, because at this year's Little People of America Conference, there is a fair amount of programming geared toward bullying issues. I hope the dwarfism community can use this opportunity to raise more awareness around dwarfism, and perhaps put some tangible tools in place that people of short stature can use to protect themselves from bullying.

As far as I know, there are no specific measures in the United States geared toward little people, though I am sure some existing measures can be applied to dwarfism. But here is a story from England that directly relates to the experience of people with dwarfism. The story is about two people with dwarfism who were harassed in a bar and outside of the bar because of their dwarfism. As a result of the experience, authorities in the town where the incident happened are adopting measures to make night life safer for people with disabilities.

I am sad this happened to the two little people in England. But I am thrilled at the response. In this case, the community is making an effort to change, and to confront bigotry and intolerance. Historically, too many times, bigoted behavior at bars and in other social arenas has resulted, not in a community trying to become better equipped to deal with diversity, but in people with dwarfism shuttering themselves away from an intolerant community. Let's hope other communities follow England's lead.

Sunday, June 19, 2011

Not enough said

A month or so ago, I ate lunch with a friend who writes columns for one of the Chicago newspapers and who has published a book or two. We get together a few times a year. He once wrote a book about hats. I wondered who would read a book about hats. He explained that no matter the subject, there is always an audience. One just has to find the audience. At the last lunch, we talked about autobiographic writing. He said something to the affect of, if you want someone to be interested in your story, you must write something that you are afraid, ashamed or embarrassed about which to talk. After that I figured I would never be published because there is plenty I am afraid to talk about, let alone write about.

I thought a little bit more about those fears recently. Last week, a good friend of mine named John died. He was a few years younger than me. The death was unexpected and very sad. At the funeral service a few days ago, John's brother delivered a eulogy. John was a person of short stature. His brother is typical height. During the eulogy, speaking about John and how they bonded, John's brother said, when they hung out, they never talked about women.

I didn't dwell on the statement. I am in no position to presume what John's brother meant by the statement. Also, the comment made sense to my personal experience. When I was in high school, a close friend of mine said to me, "I wrote in my journal that I would never talk to you about dating." I don't remember how the topic came up, but I remember that the statement didn't need any explanation. I knew what he meant. But later on the day of the funeral my wife brought up what John's brother had said in the eulogy. "It's too bad his brother felt like they couldn't talk about relationships together," she said. That's when I started to think more deeply about what my friend had told me years ago, and what we heard earlier in the day at the funeral service.

Like most other heterosexual young boys in high school, I grew deeply attached to quite a number of women during my high school years. None of them reciprocated. Who knows why. Probably because my attraction pulled me toward all of the wrong people, or because my charms, looks and (most likely) complete lack of coordination regarding the opposite sex were not enough to encourage reciprocation. In all honesty though, I probably attributed some of my failure to my dwarfism. After all, if one scans dating sites, the women seeking men sections on typical dating sites include many classifieds with the criteria, "tall."

When I was younger, I talked about my attractions a lot, pretty much to anyone who would listen. But as I grew older -middle school and high school age -I stopped talking about them. My peers had started to successfully date others while I had not. I was embarrassed to talk about dating because I thought I was the only person who was failing to find romantic relationships. I didn't want to talk about something that I believe reflected a failure in me. Also, I didn't want to talk about something that would underscore differences that already existed between myself and others because of my dwarfism. When my friend made the comment about his journal, I felt like he understood what I believed to be my failures and differences. He was protecting me from talking about something that would embarrass me.

The other day, at the funeral, I just assumed John and his brother didn't talk about relationships for similar reasons. Again, I can't speak for John and his brother, but after my wife made her comment, I began to realize how wrong I was to avoid talking about my feelings, with my friend who wrote in his journal, and with anyone else that would listen.

I would have been better off if I had spoken openly about my attractions. For one thing, speaking with another person would have helped me to work through my emotions and might have better equipped me to deal with future relationships. Also, if differences did exist between myself and others because of my dwarfism, not talking about sexual attractions, something that everyone experiences, would only strengthen the differences. Finally, by not talking with anyone about relationships, I probably only perpetuated the stereotype of people with disabilities as being non-sexual.

There is a stigma around disability and sexuality. If someone acquires a disability, even if that person led a very sexual life pre-disability, people stop talking to the newly disabled person about sex, stop teaching him or her about sex, and start believing that he or she is no longer a sexual person. Many people who are born with disabilities receive similar treatment. Whether it was my fault or society's influence on me as a person with a disability, my behavior regarding my inability to talk about what was happening probably reinforced the stigma that to this day exists around sexuality and disability.

Ironically, I fondly remember commiserating with John about our romantic trials and tribulations. Compared to mine, his efforts to win the affection of women always seemed well thought out and skillfully executed. Though our stories about women often ended in temporary heartbreak, it felt good to share the story with someone.

Quite opposite to how I felt when I was older and shared my stories with John, when I was young and hid my stories, I grew scared, frustrated, and more prone to hide in my shell. When I grew older, I found peers, like John, with whom I could share my stories. Even if the stories had unhappy endings, my confidence grew. My confidence grew because the more I shared with others, the more I realized that my personal experiences, rather than underscoring my differences, made me more human. As a young person, to some degree, I attributed my lack of success to my physical difference. I was the only one with dwarfism in school and I thought I was the only one failing romantically. Therefore, I thought the difference had something to do with it. If I had spoken out more, I probably would have met people just like me, who had experienced romantic set backs.

It wasn't until I started hanging out with more people of short stature that I realized dwarfism didn't have as much to do with my romantic success or failure as I thought it might. Naively, when I started attending Little People of America events in high school and college, I thought I'd find a lot of people with similar romantic experiences in high school. I am sure I met a few. But I also met many people of short stature whose stories of attraction (throughout their young and adult lives both inside and outside of LPA) included a fair amount of success in addition to the heartbreak. I developed a new set of peers who were living with disability and dwarfism and who had this full range of romantic experiences. It helped me understand that my success or failure wasn't so strongly determined by my disability and dwarfism, or anything for that matter. It was about growing comfortable with who we are and being proud of who we are.

At first, my dating attempts within LPA fared little better than those outside of LPA. But in a way, that was a good thing. It taught me that whether I was amongst my high school peers, my college peers, my adult friends, or my LPA friends, I was the same person. It was up to me to get to know who I was and become comfortable with who I was in order to find some emotional and romantic fulfillment. I believe one important step toward finding out who we are as people and individuals is sharing our feelings, and talking to those around us about how we are feeling. Of course, that's easier said than done. But I wonder how different high school may have been if my friend, rather than writing about me in his journal, would have talked to me, and if I, rather than hiding in my shell, would have talked to him.

The best thing for me about turning 30 was the epiphany that life goes on. One doesn't have to accomplish everything by a certain age. There is always more time. That's not a justification for procrastination. It just means that as long as you keep moving in the right direction, what you want will be there waiting for you. Ten years later, I feel the same way. The sad thing is, life doesn't go on for all of those around me. I am going to miss my friend John. I'd love it he were here today and we could share some stories together.

Saturday, June 11, 2011


Here is an encouraging post about Peter Dinklage from a social media site called "Gather." A few days ago, the post popped up on my google alerts for the word dwarfism. I was concerned at first because the alert indicated that the article might focus on negative opinions about people with dwarfism parenting children. The sentence within the alert that concerned me was, "some fans are wondering if Peter Dinklage's dwarfism may be inherited by his soon-to-be bundle of joy." This sentence reminded me of an opinion piece about "Little People, Big World" I read a few years ago. In the piece, the writer accused the Roloff parents of being selfish for giving birth to children, knowing full well the high probability that some or all of their children would inherit dwarfism. The writer thought the Roloffs should not have had children. I am guessing the writer expressed this opinion because she assumed that either a child with dwarfism would be a burden on society or that the child would not have the same quality of life as a child without dwarfism.

The writer of the Gather post didn't express the same opinion. In fact the short post ended with what I thought to be an empowering paragraph. The paragraph sends a message that disability or dwarfism has little to do with how good a parent one is, and perhaps that dwarfism has little to do with the quality of one's life.

But if their first child does end up carrying the gene, it shouldn't matter. Not only will Dinklage and Schmidt make wonderful parents, but Peter Dinklage has proved time and time again that by embracing who you are, you can be a star.

Who knows if the difference between the Gather piece and the piece about the Roloffs is indicative of a world that is better at embracing difference, the difference between Dinklage and the Roloffs, or the difference between the two writers. But I am curious to know what the writer of the Roloff piece would have to say about Dinklage's impending parenthood.

Saturday, June 4, 2011

Liquor is quicker

For some reason I don't like buying alcohol when I go grocery shopping. I go to a store about a mile south of where I live. The alcohol department is on the second floor, which means I have to take an elevator and spend more time in the store. My justification for not wanting to buy the alcohol is that I want to be efficient at the store, not make unneeded trips to the second floor. This makes no sense at all because if I don't buy it at the grocery store I'll have to make a separate trip to the liquor store. But nevertheless, I find excuses not to buy wine at the grocery store, even though it is on the list every time. For example, I often go to the store early on a Sunday morning, before the liquor department is open. This doesn't make my wife Katie very happy.

This week, I went to the store on a Saturday and knew that I couldn't come home without the bottle of wine. After I filled up the cart with food on the first floor, I got on the elevator. The elevator is small and takes a peculiarly long time to close and travel up just one floor. One other man was on the elevator with me. He was in a jovial mood. He said good morning and made a number of nice pleasantries. On any other elevator, we would have been to the second floor by the time he said good morning. But on this grocery store elevator there was plenty of time to spare. After exchanging the pleasantries with me, the man on the elevator looked at me closely and asked, cautiously, "do you find it difficult to be . . ," he paused a moment, "Short." If we hadn't already exchanged the good mornings and hellos, I might have been upset by the assumption that things were difficult because I am physically shorter.

"No," I answered, "The only thing that would make it hard is other people." I tried to inflect in such a way to excuse him from my blanket, "other people" comment. He didn't know what to make of the comment though and by this time the doors had finally opened. He told me to have a good day, then went up to the liquor counter to ask about a bottle of rum.

I found the bottle of wine I needed, put it in my cart along with the other food, and made my way back to the elevator. The man who I rode up with held the door for me. "We meet again," I said. Before the door closed, another woman with a cart entered the elevator and stood between the man with the rum and myself. It was a tight fit. As soon as the doors closed, the man with the rum said, "I need to find some ice tea." A few seconds later, he opened his bottle of rum, turned quickly to the woman with the cart and me, said, "I hope you don't mind," then took a deep slug of the alcohol, finishing nearly a quarter of the bottle. It was a small bottle, but it was also 9:30 in the morning in a tiny elevator in a grocery store. He wiped his mouth and let out a deep sigh. "Are you okay?" the woman asked. The man nodded. "I just need to find some ice tea," he said.

When the doors opened on to the first floor, the man with the rum walked right up to a store employee who happened to be standing around near the elevator. "Where is the ice tea?" he asked. I went to find a place in a check-out line. I took my spot in a line that had a few people waiting to check out before me. I waited about five minutes. While I was waiting, I saw the man with the rum again. This time, he had a jug of ice tea with him as well. He was on his way to the express check out. "Hey," he said when he walked by. After taking a few more steps, he turned around and came back to where I waited. "Are you married?" he asked. I nodded. "Yes," I said. "Is she?" he stammered and again, paused. While he paused, I should have finished his question with something like, "the mayor?" or "a former spelling bee champion?" Instead I stood silent, thinking I knew what was coming next. Instead of saying "short" though, he motioned with his hand, holding it at his waist, to indicate someone who is short.

One would think I would be prepared for this kind of stuff. I've been asked the question in the past. But every situation is different. My mood is always different. The environment is always different. The people who ask the questions are always different. So I am never ready. Besides, words are tricky. I don't want to say my wife is normal height. What then would I be? I used to say average height but my wife doesn't like it when I call her average. I've taken recently to the word typical. I heard it used once at a disability conference and I liked it. "She is typical height," I told the man with the rum and the ice tea. I don't think he knew what I meant. Who could blame him. What does typical mean? He kind of shook his head. "Ohhhh," he murmured contemplatively, almost moaning in a way. He nodded his head. "I see," he said, sounding disappointed. He started for the express lane. But he turned back and said, "You should try kissing a tall woman some day. It's fun."

Again, I didn't say anything. I should have. Just as he assumed life would be hard if one is shorter, he also placed more value on a partner that is not short. But, like I said above, everything situation is different. And not all situations enable that quote unquote teachable moment. I had trouble thinking about teachable moments while I continued to wait to check-out. All I could think was, 'this is the last time I will buy liquor at a grocery store.'