As a disability activist people love to ask me “When did you first know you were different?” I usually say always. But I don’t think people understand that the way I intend it. I’ve always been aware of my difference but only as far as knowing I drew attention. All I knew growing up was that when I walked into a room people looked at me and I loved it. I was always a performer. I sang, I wrote, I read and I talked to adults at every opportunity. I knew I was smart and I knew that they noticed. It only occurred to me later in life that the petted young prodigy drew just as much if not more attention for the use of a wheelchair. When I first started writing this bothered me. I avoided the topic of disability. I used overly complicated language.

I did anything I could to scream at readers “Notice me for my mind.” Many disabled folks I know feel this way. Like if we acknowledged people’s curiosity about our bodies we are drawing attention away from the value of our work and abilities.

Recently however, I discovered something. Most of getting great artistic work out in the world is getting people to pay attention to it. If I write pieces that could change people’s lives but nobody reads them, they can’t help anyone. I came to this world with a message and this is the body I was given to spread it. Why would I not use people’s curiosity about bodies like mine? What do I care why they came in the room or picked up my writing as long as they leave with something they need?

I teach people that any body can be the vessel for a good life. I prove that all bodies are fit for good love and good sex. I am curvy crippled and married well. Let them come for that story and stay for my great cooking and a poetry show. I will paint this body with brightly colored dresses and let the stares commence because pretty wrapping doesn’t devalue the gifts. This many not be the road all advocates choose to take and I respect that.

For me I will claim the strangers’ glances and say “Now that I have your attention, how can I teach you to love yourself.”

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Now don’t get me wrong, this isn’t always easy. Being willing to put myself on display can be odd and dehumanizing at times. This policy of education by exposure sometimes means that people forget that even I have boundaries. For example, it isn’t uncommon for me to talk about disabled bodies and sex. I do this because I think it is important to take fear out of the equation.

Disabled folks need to know that a happy healthy physical relationship is not only possible but plausible. Able bodied folks need to know that disabled people can be full and valuable partners. That being said I can’t say I like it very much when a man on the street asks “Can you have sex? or How does that work?” I fully believe anyone accosted with this line of questioning has the right to just say “none of your business.” I’ve even been known to do it myself if I sense his intentions are not the best. However, I try to have a different approach.

If someone asks me something that I’m uncomfortable with I start by establishing a boundary in a firm but non-confrontational way. This usually means I say something like “You might not want to ask people that it could be taken the wrong way.”

I fully believe in the value of talking about my body as a source of education but the first lesson always has to be that we are people with the same right to privacy and boundaries as anybody else. Now I’m comfortable talking about a lot of things that many people aren’t, so my rule is usually ask me anything because it is always my choice not to answer. Once a boundary has been drawn I try to find the education in the question. With some cases, folks are just trying to get a rise out of you and it is better to leave it at the previous step. Most people I think are just trying to learn and the question comes out wrong.

For example, if someone walks up to me and says “What’s wrong with you?” it would be easy to take offense. However, I think what they really mean to ask is “What caused you to need a wheelchair?” This is a question I have no problem with. So, I establish the limits with something like “Well nothing’s wrong..” and then go on to tell them my story. This can be a difficult practice to maintain and it is a choice I try to make every day. Like most things however it gets easier with practice.

There are a lot of questions I have heard before and I have come up with answers I can refer back to. If you catch me on a day where I’m just not in the mood I sometimes will just say “I’m not comfortable answering that” so that the channels are still open for other conversations. These moments are few and far between however and usually just show up when I feel someone’s intentions are less than kind.

People who stare can be tricky this way too. I find they usually just have a question and are not comfortable to approach me. Most times, this means I’ll approach them. If I see someone watching me with interest or hear myself being talked about I’ll walk right over shake their hand and say hello or join the conversation. This is especially important to me with kids. Children often see a wheelchair and assume that either I am hurt or it’s a toy. Sometimes I’ll be in the mall and a child will say something like “mom what is that” or “mom what happened to her.” Parents trying to be polite will tell kids to look away or make up some story like telling them I broke my leg. In these moments I’ll approach the child and say “I know it’s interesting isn’t it?” or “I’m ok I was just born different.”

Curiosity and empathy come naturally to children and I find if we educate them now they will be more generous and open minded adults.

 

More Radical Reads: How My Disabled Child Teaches Us to Honor Both Our Difference & Sameness

I don’t expect these approaches will work for all disabled folks. But for me there is power in being able to direct the conversation this way. We need examples of what it means to happy and loved in all kinds of bodies.

Nobody is required to be one if they don’t wish to be, but is a role that suits me comfortably. The only way to change the conversation about disabled bodies so that we can be more than helpless victims or infantilized angels who should be praised for getting out of bed is for some of us to offer ourselves up for examination as whole and complicated human beings.    

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