I am falling short. I am no longer that connected clued in voice about things disability on the internet….nor can I hold myself up proudly anymore as an example of the Social Model of Disability, the idea that discrimination gets us more than the disability does.
I’m going to say something rather gauche, as regards disability rights, that will offend those who still fight the good fight on the internets on a nearly daily basis.
Why haven’t you seen me much?
Because the effects of
Cerebral Palsy, gut disease, asthma, carpal tunnel, bilateral lymphedema and oh, yeah depression…
It’s too many. I can’t toss off and be cool like some of the activists I’ve met.
Because the physical, mental, financial and bureaucratic sides of this **** have begun to overcome my ability to cope. I am made silent by the conditions themselves, the four hours of daily intrusion that I have to have in order to keep on living…the hour and a half after that that I am medically advised just to lay around with my legs up…that’s six and a half hours, close to a damn job…
I can no longer sing in groups because I cannot rehearse for the length of time needed. After about forty five minutes the throat closes up…and this was the straw that began to break the back. I used to need to sing like I need to breathe. Not permitted now.
I used to have ideas pouring out of the keyboard. Now my head is filled with dosages, transport logistics, supplements, paperwork, arguing with social service and medical persons of various sorts.
I’m now a great bore, because this is all that’s in my head.
I filed bankruptcy in January. My maternal parent opined that that had to have been “harrowing.”
Apparently I’m in great danger of losing my Medicaid. I still have Medicare, but Medicaid was often the only one that would reimburse for certain services. That means no more vision coverage, no more medical transportation payments (crippling as far as seeing physicians because there is no transit in my county ) I cannot use the pump I just received because the skilled nursing care required for it’s daily usage is not covered under my remaining Medicare. Sad. The lymphedema pump was working. Twenty percent of any outpatient medical expense will now be my responsibility. I don’t make enough to have that happen.
No more home health aide services means the skin on my legs will break down sooner and my condition will worsen.
My prescriptions will now cost money and my income will decrease by at least 100.00
And if I get to keep it, *if* I get to keep it…the only way to make my excess income non countable is to lose control of my finances altogether in a Medicaid special needs trust….or, in addition to losing that control…be *required* to lose my apartment and go into a facility. (self settled trusts require that second piece )
I’m appealing…and I have contacted Ohio Legal Aid…they will likely represent or go with me to my state hearing.
All this with a minimal support system.
Twenty years ago, I managed to handle stuff like this and just carry on.
It’s not possible to do that anymore.
Younger folk in the disability rights business might see this as old school Medical Model of Disability Whining. My only warning to them is: If you are dealing with impairment *never assume* that the ones you have now will remain your only ones. I used to recognize that and try to guard against it….but I simply don’t have the resources to tell the lie anymore. The lie that my life is simply a list of different ways of handling daily living and not much different from any able person’s. The lie that it’s never about the medical side. The lie that I really can handle running this circus on my own. I’m quite sorry that I’ve taken off my Informed Crip running shoes. Really. Someone else will have to wear them.