I’m trying to breathe in and out slowly so as not to yell and go on a verbal tear in a friends defense. (and no this does not apply to any on facebook, so don’t fret)
Someone made themselves a friend of mine, on another site, who never was. They were not an enemy, they didn’t do anything bad to me, but they certainly did mess up an aquaintaince in college by being particularly clueless in their conduct towards this friend. This friend and I have had our differences, but I believe we have mended them best we can.
I defend my friends when I feel they were wronged.
It was twenty five years ago…so I’ll leave it be. But this person was *never* my friend…and they don’t need to say they are.
The following is not meant to disrespect parents of special needs kids: That’s not the group of people with impairments I’m writing about today. I speak of disabled adults.
And yes, I know it’s still April 30th over here. ‘Cross the pond at Goldfish’s the blog where all the posts will be collected it’s May 1rst. So:
We’re no longer the telethon cutesy kids, or the tearjerked recipient’s of an accessible house with our family’s appearance on “Extreme Makeover.”
It is getting harder to tell people… Don’t Assume.
It’s a fairly frequent occurrence for people with disabilities.
An outside observer decides your life is miserable based on what they feel about the impairments you have. About what they see about your body, your meds, your symptoms that distresses them. Or even your home…your workarounds for self-care. Shopping.
While in fact….all of that is subjective. If there’s an income, if tasks are done, the door is locked, the refrigerator has *something* in it…and food prep and self care are being handled—and your stuff isn’t mysteriously walking away….(see earlier post “Stuff”) without abuse or neglect…There’s a TV and a phone and some transport access…It’s up to us…not the able observer.
If the able ask, and then we admit distress…that is one thing.
But the able have no say in what is too hard *before* we tell them.
First we have to be careful to whom we say that we’re not doing well.
Depending on the situation, that could be a fast track to outside-the-home-only care.
But what do you do, as you age…as more impairments become evident? When, objectively speaking your challenges have increased and your supports have decreased?
And why does it feel like a certain form of treachery to the disability rights movement if you admit that from *your* perception, not someone else’s…that symptoms of impairments are making your life more and more challenging.
Paradoxically, there is one thing the able could ask us about doing that would ease *both* their distress and ours…and from my perspective, they don’t do it as much as they could…
.Fight against isolation….Isolation is a problem for some of us…. (Full disclosure: My own situation…I’m coming to terms with being 90% housebound. The good things: I’m lucky to be around in the age of the Internet…my interests continue to be diverse, my head is searching for new ideas and causes…I trust my caregiver. I’ve got some decent medical support, trying things to improve effects of symptoms…
So I’m not miserable. But I do feel it’s tough to get used to.]
Keep in touch by regular email and phone.
And if you live in or are passing through the place where a family member or friend lives… Give adequate notice…and show up for a mutually agreed upon visit.
In this age of Twitter and email and texting….There is nothing richer or better for challenges and mood than face to face interaction.
Isolation can signal abuse or neglect, especially if your loved one or friend is in an institution, nursing home, group home. Isolation is what cost us people with disabilities lives during Katrina.
And fight in some unusual ways. Call or write your Congresspersons and the White House (In the US) and get them to support the Community Choice Act, that provides cheaper community supports/care *outside* institutions [one of the toughest kinds of isolation, to be sure.]. More of us can keep our homes…our own spaces that have a comfort just being our own….Liberty. As in life, liberty and the pursuit of happiness.
Find a local Adapt chapter. Give them some bucks…they are the most out-there advocates around.
If you are part of a faith community, push for inclusivity if it doesn’t exist…and be a welcoming influence for people with disabilities if access to worship and social activities is already an integral part of the experience.
If you are an organization, if you’ve got programs for people with disabilities out there, use the newspaper, advocacy organizations and the nets. Get the word out.
Honestly, we are the best people to ask if things are going well or not.
Fear of our impairment, is the beginning of all those assumptions that lead to wrong belief and wrong decision making about people with disabilities. the “there but for the grace of God” argument, is a block against good open communication between the able and impaired.
Frankly, all that does is give the able an impression of control they don’t have.
Anyone could be able one day and impaired the next.
Don’t fear us, learn. Don’t avoid us. Connect. Don’t ignore or hurt us. Like and love us.
Into politics for a minute:
Arlen Specter is now … a conservative … Democrat?
If I was able to stand, I’d have fallen over after reading this. If I could drink alchohol I’d be heading to a bar to have a margarita (due to crazed astonishment.)
Wow. Just Wow.
Not to be a cynic, but I think expediency has to do with this…He knows he’d lose in a Republican primary after recent votes….
But honestly? I think there is at least a partial personal side to this:
If he’s survived cancer, he has had at least a tiny window into real pain…
The present GOP scoffs at suffering, and maybe he just can’t.
But then again there’s McCain: Tortured, and in there pitching for the GOP.
h/t to Elizabeth Bauer:
…for making me aware that Susan Boyle of the incredible voice of Britain’s Got Talent has stated she has learning disabilities…
People are surprised that someone who looks different and is a person with disabilities has this truly amazing talent.
Expanding on Elizabeth’s theme:
Why should people be surprised that disability/impairment and talent in the performing arts are mutually exclusive?
“King Gimp” the painter from an HBO documentary…
The entire Phamaly theater group in Denver — since 1989!
The physically disabled actors/actresses who have performed in soaps (I can think of at least three, but cannot recall their names at the moment.)
And, uh, not to be self-promoting, but awhile ago,
I was vacationing in Canada many years ago when karaoke was taking off…
My larger family group was about five people all told, me being the only gimp.
My uncle did a Beach Boys song:
My aunt and her daughter did a bit from the Sound of Music.
My cousin did “Blue Suede Shoes” when he was fifteen (Complete with unexpected appropriate screaming teenaged fangirls!)
I had gone before they did. Did the Eagles version of ‘Desperado.’ (I have a rather low voice for a woman, meaning that Linda Ronstatdt’s version was in too high a key.)
When I was done, there was a beat or two of silence full of astonished expressions from the other vacationers. Then huge applause.
The cheesy DJ looked straight at me and said, in the manner of buying a clue:
“You’ve done this before.”
I’m tired of a lot of things, and I do a lot of whining, well here I go again:
I wish the able would make an effort and expand their brains, and come to the realization that many of us are talented…all on their own.
We shouldn’t have to lead them around by their noses, and metaphorically post huge signs in their heads.
It’s because we don’t exist for the beautiful people, right?
That’s it. No one wants to take the time to more than get uncomfortable around bodily difference, let alone go all the way through comfortable, and yeah we’re people, to ‘wow what talent, ‘ not in surprise but in appreciation.
Hmm, just realized some favorite song lyrics are easily adaptible to Blogging Against Disablism Day’s abbreviation…
BTW this is not my official post, just a reminder that on May 1rst 2009 (Uk time, so Americans with disabilities and allies might want to get something up in the late hours of April 30th, and link back to Diary of a Goldfish’s site (by posting a comment there on May 1)…
With apologies to Bernie Taupin and Sir Elton John:
I’m BADD I’m BADD and BADD is back,
Stone cold sober, as a matter of fact.
I’m BADD I’m BADD and I’m different from you…
It’s the way that I move,
The things that I do, Oh….
Can’t wait to read all the good stuff on the first…see you there.