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.