We all have them. Days that are not so good. Yesterday was one of mine.
My life consists of living with a certain amount of faith that people will say yes to get my needs met. And sometimes, even though I completely understand, people say no. When everyone says no, it's a problem because -well- being a quadriplegic just doesn't go on vacation.
I went around the corner to get something to eat fairly early in the day. I was unusually hungry, although Meredith had left food to eat and I ran out.
When I went to buy food, no one was willing to cut it up, which meant that I couldn't eat it anyhow so I left without buying anything and tried another place. Same thing. Came home and took care of some things, then went back out to try to get food again. Nope, no one wanted to cut it up.
This was nothing to panic about, by the way. Meredith called and was going to be over. I was just - well - hungrier than usual and wanted something to eat - something more substantial than the snacks here.
I decided to check out other backup arrangements and found a company that delivers food that comes in smaller pieces which seemed like a good idea. I went online to fill out the form , but my assistive technology didn't work on it so when Meredith arrived I was still trying to fill out the form.
"What are you doing?" she asked.
Trying to get something to eat," I said.
"But I left you food-" she said
"I know, I know. I was - just- hungrier!" I said. I told her how I went over twice to get food and couldn't get it cut up. I explained what I was trying to do. She took the laptop and finished the form, then asked me again where I went to try to get food.
I had a mental image of her visiting them and explaining exactly what a quadriplegic is.
I woke up this morning and the first two words I thought of were: wonder and awe. (Not shock and awe.) I watched Grace is Gone last night, a movie about a husband of an Iraqi soldier who dies, leaving two young daughters. Unable to tell the kids, he takes them on a trip. The movie was not your usual Hollywood drama. John Cusack as the widower was realistically distraught, confused, paternal and in shock.
Shock. That's the kind of shock this war is causing. The shock of grief.
The wonder and awe is about the resilience of the human spirit and the kindness and generosity of the human heart. I have faith in both.
Yeah, yesterday was a not so good day. But it was the first day everyone said no. So today will be better. Because I have faith that more people say yes than no. And I have faith that these words might help some people understand why it's so important to support programs for personal care assistants. Relying on the kindness of strangers, albeit workable at times, can leave you - hungry.
11 comments:
Sure you can write a blog but can't cut up your food. How is that possible?
Voice recognition.
Wow. What an awful, awful day. And an awful comment, too.
hug,
WCD
Technology is such a blessing. I can't imagine why someone would not help you cut up food, or what kind of mindset that would take. Honestly, it makes me angry. I hope this is the exception rather than the rule.
WCD- thanks. :)
Frida- I get the most dismal response I've ever encountered in terms of accommodations re cutting up food from restaurants and other businesses. Some will cut things in half or quarters and no more, even when I explain that I need it cut up to eat. I am sometimes told I should "bring someone with me". I'm very fortunate that I have a PA and I get a lot of hours of help, but she can't always be with me. Nor do I necessarily want to turn friends into helpers - or business associates. I certainly don't think it's appropriate to turn other customers into helpers.
It is not uncommon that I have to go to several places to find someone who will do it or send the food back a few times in order to have it cut up so I can eat it.
Ruth,
I am always relying on other individuals to cut my food up as well. And like you I am reluctant to ask friends and business associates but what choice do we have?
I recently found a local restaurant that I can drive my chair to and quickly made friends with the staff and owners. I tap on the glass door and someone lets me in, when I order I asked them to cut up my food and when they bring it to the table I ask them to get my fork out of my side bag. I tip 20% and go there about once a week, if I'm by myself at least I know I'm getting a meal.
The way I look at it if they want our business it's a reasonable accommodation. I hope your day gets better today, take care.
Greg
Greg- Exactly - not much of a choice if we want to eat!
I agree that it's a reasonable accommodation. I've also tipped,asked for what I need yet when I go back the response is unpredictable. Perhaps it's because it's a crowded, busy area with tourists. I'd rather work it out than sue anyone, but this is the kind of experience that, once you've explained, etc., you start thinking that perhaps that is next. In any event, I really appreciate your suggestions.
I was more frustrated for you then offering suggestions. I know you are an outstanding advocate for yourself and others with disabilities. I'm sure you have tried to problem solve every aspect of this, maybe you need to offer these restaurants a free sensitivity training for their employees. Our lives are certainly not easy, good luck.
Greg, I know, it is frustrating. Thanks.
I've cut up food for one of my friends many times and had to give some assistance with eating. She said sometimes when others visit her they forget to feed her or position things where she can help herself, though her food's in front of her. You shouldn't have to ask, but customers might not turn you down. I've had to ask assistance sometimes for minor stuff from people; some are very helpful though some won't and get upset.
I'd feed you guys! I wish others would.
As far as comments go, there are a lot of doubters about why we can do one thing and not another. I hope that Disability Studies has the same trickle down effect that Women's Studies and Ethnic Studies have. Says the woman who can sometimes hike short distances and sometimes can't get off the couch.
Frida- thanks. And my friends with invisible disabilities really get the doubters - tenfold....
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