Sometimes talking to anyone can be a tricky thing. I feel like an apology just as readily needs to grace my lips as anything else I could possibly say, because often when I have personally given offense, it was most certainly not intentional. What one person in a group finds offensive another does not, and that is never more true than when you are dealing with a group so diverse in needs and experiences as the disabilities community.
I am going to refer once again to an essay written by the Harriet Tubman Collective, as it is found in Disability Visibility, edited by Alice Wong. The essay authors were criticizing the use of the term “differently abled” because it “…is considered offensive within the disabilities communities.” They went on to explain that “the phrase ‘differently abled’ suggests that we are the locus of our disability when we are, in fact, disabled by social and institutional barriers.”
I find this to be an interesting point of discussion on a couple of levels. One, I have used that term myself on this blog, and some of our little man’s therapists have used it also. Certainly none of us wanted to give offense to any body. I can, of course, only speak for myself here when I say anyone who was bothered by that has my most heart-felt assurances that no offense or minimizing was meant.
As I see it, sometimes the important thing becomes finding out how each individual feels and what terms they want used about themselves and their own personal circumstances. Listening to each other as individuals about what we feel that we need to be supported- and honoring those expressed sentiments- is one of the best things I think we can do.
Because the other side of that coin is that sometimes, especially when there are sensory differences involved (as there are for our son), a person does have a different ability. For example, Tony’s hearing is a great deal more sensitive than most people’s. He hears sounds other people miss. Nothing has been taken away from his hearing. There was no “less than” as others would see it in what he is physically able to do because of that, but rather a “more than.” This, in the literal sense as I see it, could be considered a different ability. Of course, this enhanced hearing does lead to life feeling different for him and for us. There are situations we have to avoid because they feel physically very painful to him because his perception is that they are far too loud, and this often excludes us from participating in activities considered to be “normal” cultural or social events within our community.
This hints a bit then, at something that could be a societal barrier as referenced above. I believe a couple of excerpts from Andrew Solomon’s Far From the Tree also illustrate this concept a bit, and I am providing screen shots below:
When reading interviews in From the Periphery, I noticed a reoccurring experiential theme in the words of individuals who suffered a change in mobility from an accident, illness, or other trauma. Mara Bristo, for example, talked about the first time she tried to go to a store after returning home as a wheelchair user. She said, “So the first day, I went to push to the grocery store, I pushed and realized the curb. So I went all the way around the block, which at that time was hard for me to do physically. And then I realized there was a curb on the other side.”
Our communities are structured in a way that some can’t readily access necessary buildings or businesses. Personally, in my lifetime, I have not heard many conversations revolving around the importance of modifying our communities so that they embraced the needs of everyone living within them. The ADA has certainly improved some things, but not others. How we think about the needs of disabled community members often shows even more cracks with what isn’t being done during emergency conditions such as our current pandemic. I read the following, for example, in an article written by Erin Donnelly:
Sky Cubacub, writing in Disability Visability, talked about how clothing designed for individuals with disability who cannot wear what is typically produced for the mass market often is centered “mainly on function, with almost no concern for aesthetics,” with “most clothing made for disabled people cater[ing] to senior citizens.” Few manufacturers produce products that acknowledge that a person’s desire to enjoy attractive clothing will generally remain despite other changes in physical circumstances.
And, when was the last time any of us clearly remembers seeing a leading man or woman in a wheelchair? How about an amputee, or someone with a feeding tube? A non-verbal person maybe? Was Christopher Reeve still cast as a heartthrob after his accident?
If I woke up altered by an injury, illness, or stroke I would still have the same desires for intimacy and connection. I would still want to be seen as worthy of love and my marriage. I would still adore all things glittery and I would prefer to wear fabulously loud clothing. Would I see a recognition of my right to feel and find those needs being met represented in our community?
I saw media coverage in the New York Times and other prominent media outlets when Gigi Gorgeous, looking stunning as per the cultural norm for weddings, as a trans woman, got married. I watched a super sweet commercial from WalMart last year featuring a gay couple on a first date. Such a glimmering emergence of representation for many within the disabilities community is nowhere to be found, and if it is, only for those individuals considered “higher functioning” or more closely approaching what we consider to be “normal.”
As the mom of a kiddo with a diagnosis for every year of his life and behavioral challenges most people aren’t used to seeing within the community, I realize that our family and our son may see and experience things from a perspective that others don’t. I also know that others in this community are certainly seeing and experiencing things that we are not. Only when we hear everyone’s pain, their words, their stories, and their needs can we begin to create community spaces that truly embrace us all.
