Redefining Disability Challenge – Question 23

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty third question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

Earlier this week I had an online social media discussion about language and disability. The conversation revolved around the idea of person first language, or PFL (person with a disability, woman who has diabetes) versus identity first language, or IFL (disabled person, diabetic woman).

I have written other posts about my preferences regarding language, and you can read them here and here. I prefer journalists write or speak about me in the media using PLF. I am a woman with a disability, or a woman who uses a wheelchair. I use PFL myself – except for when I use ILF.

I use IFL when I am making a point about feeling disabled by society. When a business owner has prevented me from accessing a patio at the rear of the restaurant because she has not ramped the step, I am disabled by lack of access. When conference organizers invite me to speak but do not provide a means for me to access the stage or microphone, I am disabled by their lack of preparation and accommodation. When a Personal Assistant does not show up for her shift and I am unable to get to a bathroom at the time of my choosing, I am disabled by her lack of professionalism and respect.

I am disabled by others, not the neurological impairment which has been a part of my life since birth. Let me say that another way. The lack of muscular strength does not disable me. Other people, lack of access, or technology which does not work – these things disable me. I use IFL specifically when I feel excluded from full participation to make a statement of how others have made me disabled. I do not see myself as disabled until society or lack of access make me disabled.

My use of PFL in some instances and IFL in others does not mean I do not have pride in my identity as a member of the disability community. I DO have pride in my disability. I am proud to be a part of the largest minority, the only minority group anyone can join at any time. I think my hesitation with accepting others using IFL to describe me comes from the semantic meaning behind the words.

Because I live with a visible physical disability which requires me to use a wheelchair, my disability is often the first thing observed by strangers and those around me. It is a fact – humans notice differences. It is what we do.

Just because my disability is the first characteristic others see doesn’t mean it is the one I want to be remembered for. And it doesn’t mean my sole identity is as a chick in a chair. But for many people who live with visible disabilities, we are accustomed to being known or recognized for our differences. And at times we are subject to the assumptions made about us because of our visible disabilities.

People who don’t know me usually assume my neurological impairment makes me disabled, and feel pity for me because I use a wheelchair. The truth is, my wheelchair is a liberating, necessary piece of adaptive equipment which makes my neurological impairment less disabling. It is the lack of a functioning wheelchair which truly disables me.

This chair is just one part of who I am. Just as you don’t like always being seen as only one part of your identity (Sherri’s mom, or the IT guy, or the annoying person who parks across two parking spaces) I don’t want to only be seen as the token disabled person. See me as a person – a person with feelings, intelligence, and abilities – who just happens to use a wheelchair to get from point A to point B.

Don’t we all want to be seen as complete people? Doesn’t everyone want to be acknowledged for more than just one part of their identity? Just because we want to be seen for more than one component of our identity does not mean we turn our back on the pieces of ourselves. I am still a writer, a crocheter, an aunt, a daughter, a speech-language pathologist and a Rotarian.

And I am a proud member of the disability community, even if I prefer you use person first language when you write about me.

Unless you’re the idiot who parked illegally in the access aisle next to my van. Then I’m disabled by your ignorance, and I’m going to call the police to have your vehicle ticketed and/or towed.

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9 thoughts on “Redefining Disability Challenge – Question 23

  1. We recently stayed in a hotel and since it was late at night when we checked in, and had to change the previously made arrangements, the front desk clerk felt at that point that it was ok to give us the “handicapped room”, since it was the only one left. First, I said, “you mean the accessible room, correct?” Blank stare. Me, ” Labeling the room handicap doesn’t promote a strenghth based statement for someone who needs accessibility.” Then I asked what would they do if some one tried to check in and needed the room. blank stare again. Me, “Well, speaking from experience, unless it was an emergency, chances are the person who would need that room would most likely have made arrangements prior to this time so I think you might be ok in giving it to us.” Her, Ignoring me at this point, “Sign here, Mr. George.”

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    • This made me laugh. I applaud your attempts to promote strength based language. I also appreciate you recognizing there might be someone else who truly needed the room. I’m glad they kept the room available instead of giving it away earlier in the night! I hope you enjoyed the spacious bathroom 😉

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  2. I appreciate how your posts frequently challenge me, Dee. I have to be honest and say I am thinking hard about your statement, “I am disabled by others.” I have a non-visible challenge that, when active, prevents me from engaging in activities and managing life (depression). For me, it’s actually this illness that disables me. Maybe the difference is that nothing anyone else does or doesn’t do changes my ability to fully participate, except my doctor in adjusting medications. I understand the PFL vs IFL preference. I don’t like people thinking of me as a “mentally ill person.”

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    • I am so glad you shared your perspective. I think the difference between a visible and hidden disability creates unique experiences for everyone. I know there is technology which can minimize the impact of my neurological impairment in my ability to function in the world around me. Thus, the disease doesn’t disable me because I can manage the resulting deficits. Thank you for continuing the dialogue on a important topic.

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  3. “Just because we want to be seen for more than one component of our identity does not mean we turn our back on the pieces of ourselves.” This is important. I hesitate to ask people about their disabilities/acknowledge their disability because I don’t want to seem like I’m reducing them to that component, but it’s also a large part of who they are.

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