Got back a little while ago from my visit into the Land of the Living. Thank God for Judy, who is the only person lately that comes to get me out into the non-ALS world [which I call the Land of the Living]. I love just sitting and people-watching, not always from the window of an Access-a-Ride bus. And to talk about something other than ALS. But I accept that my apartment is not conducive to entertaining. It’s embarrassing to have a commode and certain equipment in full view. Two of my former students came to visit me and cook me dinner, and I didn’t think about how inapproriate this place is for visitors.
And leaving the apartment seems to make others feel, well, a little uncomfortable. I thought my mission was to be out there and show that one can live with ALS, but I guess it didn’t work out that way. This disease makes other people very nervous and confused. I am getting tired of hearing how people don’t know how to act around an ALS patient, and what a frightening disease it is for people to look at. And most of all, I am sick of hearing “well, what is he/she supposed to say/do?” when I relate to other people that someone else was disrespectful or rude to me. All I can say is “learn, people!”. And it would be nice if “friends” could help set people straight, and it can be done nicely. Yes, it’s not easy to be around me;it’s even harder to BE me. If someone asks you questions about me, or refers to me in the third person, with me sitting right there, would it kill to say “you can talk to her; she hears and understands”. Recently, when an ignoramus at my hair salon screamed in my ear “CAN YOU PLEASE COME TO THE BACK”, my aide politely said “Please don’t yell; she isn’t deaf”.
Case in point: I recently related to a neighbor that it was totally unnecessary for the president of our co-op [who I might add was at my polling place today wearing a button indicating that he was there as a poll-watcher for the Republican party -- blech!!] when he explained at the annual meeting to another resident who complained about our automatic door [which I fought 21 months for], he said “It was not the building’s choice to put in that door; we had a resident in a wheelchair who put in a complaint”, while looking over at yours-truly. So this neighbor said to me “Well, what was wrong with that answer? What should he have said?”. Well, let me tell you what he COULD have said:
“It’s the right thing to do” OR
“It’s the law that all areas must be accessible to all of our residents. We were not in compliance for 16 years, and we got away with not retrofitting the building because nobody really needed it — until 2 years ago”
What is wrong with either of those answers? And as for my neighbors and “friends” who may be confronted with these people who never imagine that they or a member of their families might be in a wheelchair some day, why can’t you turn to the person and say:
“You know, one day it could be you, or someone in your family, that uses a cane, walker or wheelchair. Won’t you be thankful that someone before you, fought for accessibility, so you won’t have to?” It doesn’t have to be hostile or confrontational. C’mon people — none of us is getting younger and most of you will live to a very old age. Chances are, many of you will have mobility issues sometime in the future. Why do you all look at me as if I am some freak of nature who should shut her mouth and just be grateful I am even allowed to live among the Living?
Which brings me to my polling place. I elevated my wheelchair and STILL couldn’t reach the top row to vote for president! Judy had to come in and pull the lever for Obama. AND NO — don’t even go there! don’t tell me I should have gotten an absentee ballot! I am not in a nursing home, housebound, or out of town. We [disabled people] are supposed to be able to vote in one of the hundreds of accessible voting booths throughout the city, that obviously didn’t make it to Rego Park. Even Judy was outraged because where she voted in Roslyn, they had an accessible booth.
Right now I am praying that tomorrow we will have President-Elect Barack Obama!
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