Disabled 24/7

I will admit that having jackhammers at 8:00 a.m. tear into the sidewalk outside my apartment, and continue for eight hours has left me less than lucid. Having come from the Dentists office has left me fatigued and frustrated (a cleaning and check-up).

This is the problem I am having and have had for many months: I am disabled 24/7 but the agencies and individuals involved don’t seem to understand that. There is always this line of overlap or expectation that I could pop into a near-able bodied state to sort of tidy things up if I wanted to. Now the more that I become not only disabled in a variety of areas but also with greater inflexibility the more apparent it becomes.

Sure there is this computer, which has been sitting here for months, sent to help me, as a disabled person, maintain a home business. And yet, it took six months to get authorization to hire someone to take the computer out of the box (Because I am not sufficiently physically capable of lifting it around), and the same amount or more for someone to hook it up to all the cables. And now, we still wait on the software, which has the wrong ID code, and the person in charge of it has disappeared, and the new person in charge has not gotten back to me.

Today, Linda parked not in the parking spot closest to the mall entrance, which was reserved for pregnant mothers or mothers with small children (because they can’t walk very far), but in a regular spot near by because the blue badge disability spots were down hill two parking lots away (because people in wheelchairs can walk a lot further?).

In the dentist, the dental technician got upset because I did not recognize him, and though I explained that he should NOT lower my head equal or lower than my torso and was starting to tell him about speaking, he cut me off with a, “let’s get started shall we...” He lowered the table to do my dental cleaning, then more, then until my head was lower than my torso and my main job was a) keeping conscious and b) trying not to breath in my own combo of blood and spittle. He asked me a question, I tried to speak but couldn’t, he went, “I don’t understand you.” Asked another technician, they looked at me like the fish on the floor, as I was trying to say, “Suction the blood out of my mouth and bring me upright before I drown in it!” But decided that he would simply continue. Only now it was with the frenzied haste one gets after people have seen ‘the disability,’ he was hitting my gums so much in his haste and even managed to hit my lip and make that bleed. Linda came. She told him that I couldn’t speak in that position. Yes, would that be the same instructions I gave, but obviously in “Wheelchair English” which is some sub-dialect of able-bodied English.

Yesterday, I am green, I have told the oxygen woman I am heat intolerant and she is TRYING to keep me in the building to finish off convincing me that loud machine for COPD people is what I want. She is trying to tell me, as I am in danger of passing out that she cares about my health.

See, they don’t accept that unlike them, there is no switch I can flick to go into able bodied or ‘I am NOT ill and disabled and thus have lots of resistance” mode. That you keep me there, I pass out. Or as I said to the dental hygienist, “I CAN NOT FLOSS at the end of the day as I do not have digital control, if you WISH to come by and floss for me, please help yourself.” He was very, “Well, no need to get all excited.” And yet went and booked another cleaning in four months. Because since his last cleaning I aspirate, I have seizures, I am constantly on oxygen (and was during the cleaning) and I have a very low threshold for heat so much that Linda not only put a ice-cold break pack down in my bra but jammed one in my groin, during his cleaning. So no, “how about we call and see how you are and then book an appointment?” Just, hey, everyone ELSE gets four months.

We have two VIHA social workers upset at us because we had to cancel appointments. One because she had to leave a voice mail message. We tried to return her call today and got….a voice mail message. The worker who is most miffed is the dietician, who does not seem to care that I am below the minimum body weight that SHE set, but that we had to cancel the first appointment (even though I was in the hospital), as well as a second (because I was in a emergency specialist appointment). It seems she MAY not visit because, I don’t keep my appointments. Welcome to illness, welcome to disability. Do you think my seizures come on appointment? Do you think people’s Lupus flares or EDS dislocations come on appointment? Do you think I fly out of the chair on appointment? Do you think I can’t breath ON APPOINTMENT?

The worker at Recreation and Integration has been talking to me like a six year old. Calling weekly because “I” don’t have a good record for communication (would that be the same RAI that didn’t call me for the deadlines on the sailing program and the summer program and the glider program for two straight years). And that I don’t have a “good record of commitment.” This is because I was a) late because having no other transport I wheeled myself DOWN against traffic to the sailing program and arrived late once and because another time I left early (in an ambulance). Yes. And I am not communicating with my volunteer well. I asked, “Is this the volunteer who can only do activities with me two hours on a Saturday?” Yes. The same one who was gone for a month visiting after she was gone for a month doing exams. I was still doing my boxing then, I was still doing my activities. I was informed that the volunteer ‘might’ be able to do other times, but that if I did not give a firm commitment and keep to it to improve my communication, she would be taken away.” I told her that I exercise Mondays, Wednesday and sometimes Thursdays and if and when the volunteer can help, I will use her, but I had been doing that exercise and will continue without their help, if they are incapable of helping. This went down poorly. I was not appreciative. It seems I was supposed to sit and do nothing until the volunteer could tell me when THEY could be available and then go to the park or something. Lady, I don’t roll that way.

Linda is going to try and speak to her tomorrow about our “six month review” (again from Rec and Integration) and I asked Linda to include two things. One, to ask if I should put down my volunteers last name when I list them on MY CV as volunteering to assist college students in a course on breaking down ablist attitudes in sports (I know I am just a CV filler for these people, including the person at Rec and Integration). The second thing was to let them know that since they put their ad in the Victoria local Recreation and Sport flier saying, “Are you disabled? Do you want to do anything in this booklet? Rec and Integration will assist you in doing that!” that I will take them up on it. I am thinking Ballet and some martial art. My medical issues? THEIR problem, not mine. They are the ones who promised to assist me, they figure it out; since medical issues ARE part of my disability.

I am tired of GP’s, Specialist and specialized tech for hospital testing who KNOW what level your illness is but then get upset that you are in hospital and didn’t have the politeness to call them in the ambulance (despite being passed out). Or that, no, you couldn’t transfer yourself DOWN to the MRI/CT/insert test here, and oddly after the test is over, you are not able to fly back to your wheelchair, no matter how flummoxed they might be about what to do.

When I went for my Heart Monitor to be put on the doctor was, “Oh let me give you this gown.”

I pulled off my top. I was wearing my bra.

He was very agitated, no, I must put on the gown, and THEN he could lower it to put on the sticky tabs which the leads would be attached to. Well sorry doc (not!), but taking off my top I can do, getting into a damn gown I can’t unless he has two or three people significantly taller than the five foot aid he had with him. Weaker actually makes me HARDER to change, because I can’t help, but it doesn’t make me shorter.

I am trying very hard to do my job, which is a 24 hour job, of keeping myself OUT of hospital, OUT of seizures and if at all possible OUT of the majority of pain or other problems. They need to respect my job as much as I respect theirs and actually fit themselves into my schedule; and make accommodation. It is plainly embarrassing for them when I visit a health clinic or hospital, or my GP and yet again there is no room large enough for the wheelchair, no changing room for people in wheelchairs. I usually say loudly and often, “How lucky you are you don’t get SICK people in here!”

I hope, if I have time tomorrow to expand on this further with one of the more loathsome myths, that David Merrick aka The Elephant Man, died because “he wanted to be normal” and lay down crushing his windpipe. Think on this, there are many people with MD, people on Ventilators, on b-pap machines, on dialysis machines, people who live day in and out with their disability but also the vigilance to KEEP THEMSELVES ALIVE that such a disability requires. I am among probably tens of thousands of people who require that they sleep in an inclined position to stop from aspirating and choking to death. Does anyone really think that they need to call me and the other tens of thousands regularly to ask, “Oh, now you aren’t going to use your electric controls on the hospital bed tonight to put it flat so you can feel NORMAL and die are you?” Or “You aren’t going to just pull out your vent so you can feel NORMAL” Or, hey, why not throw my wheelchair into the ocean on my next Ferry crossing so I can drag myself off to feel NORMAL. Fuck, we have a full time job trying to STOP people killing us off and limiting our lives. The people who can’t accept that we have strong, inflexible and definite limitations, which are built into our disability, are the able bodied people who often run everything from health care to the disability organizations there to ‘help’ you.

BARF!