Disabled, not Unable!

Disabled. Apparently the word carries connotations that those of us who are disabled don’t always associate with characteristics that describe ourselves. I was presented with this idea on a recent phone call with my mother who had accompanied me earlier to a dentist appointment – it was a second opinion appointment and I wanted someone to come with me to hear what the “second opinion” actually entailed because I have been thrown so many opinions regarding what should be done with my “difficult case.” While I was talking with her, she told me that things seemed to go smoothly after she had told the doctor to please speak with me instead of talking with her since I know what is going on with my teeth (and general dentistry terms) more than she does. I stopped for a moment and thought about what she had said – it is true that often when I have an appointment with a doctor for the first time and I bring my mother or someone else with me as “support” (something I honestly implore everyone with any kind of disability or chronic illness to do) the doctor initially speaks with my mother or that “other person” and not directly to me. I never thought much of it until my mother said over the phone that it always bothers her when doctors speak with her and not me because they hear or read the word “disabled” and, seeing that I can walk and don’t appear “disabled,” think I must be mentally challenged. Although I have been through this situation time and again, the realization that the word “disabled” necessarily carries with it connotations of mental disability had never really occurred to me.

As we continued talking on the phone my mother, who works with children with special needs in primary school, told me this same situation often occurs with her current “charge,” a child who has mental disabilities. She told me that teachers will often come up to the two of them and ask my mother what class the child has next to which she replies “Please speak with him not me.” In this situation, the word “disabled” does carry mental implications, but it does not mean the child is unable to answer for himself or herself. If I think about “all” cases of “disability” – even ones like this that necessarily insinuate a mental aspect – there are very few “cases” in which the term “disability” at all implies the disabled individual’s inability to speak for himself or herself.

This is most certainly the case with me. I certainly do not come off in any way as inarticulate or poorly educated; I often speak quickly simply because my lips literally cannot keep up with the speed at which my brain processes information and I try to get out as much as I can while I am still thinking of it. This presents an interesting fact as well – compared with my mother (who, by the way, is far from “stupid” as well), I do know much more about medicine (and in this case dentistry) than she does not only because I take the time to research these subjects because I have interests in them but because I LIVE through what the doctors are trying to discuss with what is essentially a “third party.” Most patients with at least moderately severe disabilities or chronic illnesses simply MUST know the “basics” of their disabilities or illnesses; at the very least, when mental incapacities are involved, the “patient” necessarily knows how he or she is feeling, whereas a “third party” cannot. So is it true, then, that doctors – people who should KNOW the word “disability” can mean almost anything (“DISABLED NOT UNABLE!”) – still see the word “disability” and think if a patient doesn’t appear to be disabled (for example, when one’s disability is an invisible illness), he or she must be unable to communicate at the level of an “average” doctor/patient discourse? Is this merely unexamined social conditioning or is it something more than that – for example, is it something like the “God Complex” many doctors (even the best ones!) often develop? Or is it more simple than that – for example, doctors see the patient with an older person with them and simply talk to the “older” person because of an unspoken “respect” issue or issue of authority? There are many subtleties to this perspective and I certainly have only scratched the surface of uncovering what they might be and why they might be.

Have you experienced this “disabled” treatment when you have seen doctors? If so, how do you rectify the situation, or is the situation “rectified” by the other person who comes with you? In this specific case, once the doctor did start speaking directly with me, it became apparent to him that I knew much more about what he was discussing than my mother did and he never turned away from speaking directly to me. In my case, this is often the case – once doctors see that I am well spoken and highly educated regarding the subject(s) at hand (for a patient at least), they rarely speak directly to others (unless it is about things unrelated to medicine or unrelated to the specific reason I am there). I have actually “let go” of many doctors who have failed to speak directly to me – the doctors that I have now are generally ones who recognize that I know much more about my disease(s) than they can ever know – again, not only because I continually research these conditions, but because I live through them every day of my life.

At any rate, I would love to hear your experiences with doctors and how they treat you when they hear or read the word “disabled.” Thank you very much for taking the time to read this and I hope you are having a happy and healthy day wherever you are in the world!