Paul Hunt wrote a book in 1991, “Stigma”, which I found out about while researching disability and the challenges I’ve been facing since I’m no longer able or willing to hide in plain site, passing for normal.
While I have yet to hear back from the lawyer about his outrageous claim that I am clearly disabled but “too well” for him to represent me in my case against my former employer, I’m filling the back of my brain with thoughts and images about what has to happen next to enable me to have a life. A quality of life worth living vs. simply enduring.
Paul Hunt hypothesized that it was not the impairment that kept people back from being all that they could be, despite their handicaps. Rather, he felt that there were a series of social constraints imposed on people with disabilities which allowed others to discriminate against them with impunity.
Very similar to being a working stiff, and being sidelined once one reached retirement age and yet they had not amassed a large amount of money to supplement their social security payments kept in trust after being deducted from their paychecks for years, the shock of suddenly being “old” or “less able” is very similar to the shock of suddenly being unable to pass for normal, and acknowledging our level of incapacity.
Similar to a transgender person, deciding to go public and face the doubt and ridicule of others for simply claiming that they are in the wrong body, and cannot live as their assigned at birth gender any more, a person with birth defects which are disabling and who can no longer hide their challenges is also no longer able to pass for normal.
Each are handicapped, and subject to a variety of discriminatory perceptions and judgements by society as a whole, but especially if they don’t have a seeing eye dog, cane or wheelchair and “dare” to claim that that they disabled and can’t keep up with the norms.
America is prejudiced. Always has been. Hopefully, it won’t always remain that way. But for now, disabled people face attitudes and policies which deny equal access to opportunities – for employment and for fun – and thus their lives become a trainwreck of trying to subsist on benefits that couldn’t keep a cat alive, never mind a cat with an illness. Trying to remain upbeat while also being challenged to “not do too much”, to “not exert themselves” is a recipe for disaster – both in terms of inclusion in society, as well as for that individual’s mental health.
Your five year old dressed up as “Grandma” may be darling, but for those of us dealing with the reality of a halting gait, or a walker, it’s anything but endearing.
Do I want you to take your child’s photo off facebook?
Do I want you to sanitize your imaging?
No and no. What I want is accountability. An acknowledgement that many of us can do more than is “recommended” or “allowed”, and that outside restrictions on someone trying to find a way to survive is not reasonable nor practical.
Especially when we’re dealing with an aging Boomer population. A population which is used to earning their way and enjoying the fruits of their labors. A population which very much resents the infirmity that may come with age, despite our best efforts, and which hits us all in different ways at different stages.
Still thinking this issue through, but I’m hoping that I’ll get a book or a TEDx talk out of it at some point, LOL. I’m nobody’s idea of a cheerleader, however, I’m not dead yet, and I refuse to be a quitter.
My middle name is “resilient”, and I will not be kept down just because some lawyer is too lazy to do the necessary work to understand that I am more than a stereotype of COPD impairment.
Like the aggravation of of the fictional Tyrian Lannister character for dealing with the world that undervalues him because of his small stature and physical deformities, I am going to find a way to survive, ethics intact, despite the physical challenges of my reality.