TASH Countdown to the ADA Video #3

Another Crip Creature: Einstein the World's Smallest Horse

Although his vet says Einstein is not a dwarf horse, he is so tiny that I know if he were human (proportionally) he'd qualify for LPA membership. Check out his website for more info and videos (there are TONS if you click on news) of the little guy.

AAPD Countdown to the ADA Video #5

TASH's Second Video-Judy Heumann

I find it very interesting that throughout the video Judy, very purposefully it seems, does not use people first language. GO JUDY!

I Know, I Know, My Blog Has Turned Into a Vlog

It's just that I'm too tired to post and vloging is the quickest and easiest way to get posts up everyday, in one day. A well thought out written post could take an hr, while posting a vlog takes like 5mins. I can really bang them out. Sunday's through tomorrow's posts were all posted on Saturday. I'm glad a lot of them are captioned for my Deaf/HOH readers.

I'm taking a quick break from vloging to bring you a bit of AWESOMNESS, because it is a short-ish bit of news.

At my internship last week I started a project that's developmentally appropriate for elementary school kids. It involved pulling pictures of disabled people (tried to keep to kids as much as possible) out in the world doing active productive things. I got things like wheelchair basketball, a young woman with down syndrome in a chef's uniform (complete with food she just made, in a professional kitchen), I was looking for 40 in all. The thing was, I didn't even get half way through when I realized my pictures were incredibly biased towards physical/visible disabilities--a few wheelchairs, a kid with a blind cane, another with a prosthetic arm climbing playground equipment, but I was clearly lacking in representation of invisible disabilities.

It is rather hard to find pictures of invisible things. So I had to get creative and took a picture of 2 girls taking a test, putting the caption "Kids with learning disabilities sometimes need extra time to finish tests." I still had trouble with autism in particular, dead set on staying away from the ribbon.

What I did in the end was go over to amazon and pull off covers of children's books. Taking Autism to School and Let's Learn with Teddy About Epilepsy. Me being me, of course I want to include something about bipolar. I didn't find anything that sufficed when shrunk to 1.4in X 1.4in, but what I DID find was ELI, THE BIPOLAR BEAR, which I am not using, but still, HOW COOL! I am waiting very impatiently for it to arrive via interlibrary loan, and alerted my shrink that she should buy. It's pretty new.

Anyone peruse it? What'd you think?

AAPD Countdown to the ADA Video #4

Why is it that both AAPD & TASH are so lazily interviewing people in DC, where they are located and not branching out across the country? Bob Kafka would be cool, he kicks ass.

Who Says Autistics Don't Have a Sense of Humor

Anyone know what day this was on TV?Thanks Ellen for pointing me towards this video

Autism Referral in a Jiffy

I found this video while I was doing a google image search for something I did not find. I did however find a picture of Glenda, clicked, and found Irked Magazine, where this video is located. Any of you know this blog? I've never heard of it & it's been around since 2006. It looks like there's cool stuff on there.

Thanks Adelaide!

For pointing me to Mr Shuffles. You're right, if he were human (not an elephant) he probably would have CP. Although if you look at the zoo's channel, he doesn't seem to shuffle anymore. Google Mr Shuffles to find out his story.

TASH Also has a Countdown to the ADA Video Series

Way to be a copycat TASH

I Have the SEXIEST OF THE PALSIES

Apparently Oprah is having a contest to find the next big TV show host and this guy is winning by a landslide. I'm too tired/depressed to look up the link to vote, so do it yourself. Also youtube this dude, John Mayer posted a vlog offering to compose Zach's theme song. Oh, and Zach is also training to crawl the Austin Marathon. Good idea? I dunno...

Thanks Beth for the heads up!

Cat Has CP

Apparently it's called Cerebellar Hypoplasia (CH) when you're a cat. There are more youtube videos of other cats with CH if you care to look. Found through Bethany S, via FB newsfeed

Countdown to the ADA #3

I know... I need to write something... I had some stuff in my head, like comparing nursing facility closures and BRAC, but yeah... not so much now...

Because I Have No Time to Post...

here's another AAPD ADA Countdown Video

I Don't Think I've Ever Posted the Credo for Support

As I was posting yesterday's poem I remembered the credo for support that was brought to my attention a few years ago. The two poems go hand in hand.

Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society, used as court jesters, drowned and burned during The Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered. Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather than equity and respect. And so, we offer you

A Credo for Support

Do Not see my disability as the problem.

Recognize that my disability is an attribute.

Do Not see my disability as a deficit.

It is you who see me as deviant and helpless.

Do Not try to fix me because I am not broken.

Support me. I can make my

contribution to the community in my own way.

Do Not see me as your client.

I am your fellow citizen.

See me as your neighbour.

Remember, none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still & listen. What you define as

inappropriate may be my attempt to

communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind "professional" distance.

Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do Not use theories and strategies on me.

Be with me.

And when we struggle with each other, let that give rise to self-reflection.

Do Not try to control me. I have a right to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive and polite.

I need to feel entitled to say No if I am to protect myself.

Do Not be charitable towards me.

The last thing the world needs is another Jerry Lewis.

Do Not try to be my friend. I deserve more than that.

Get to know me, we may become friends.

Do Not help me, even if it does make you feel good.

Ask me if I need your help.

Let me show you how you can assist me.

Do Not admire me.

A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equality.

Do not tell, correct, and lead.

Listen, support, and follow.

Do not work on me.

Work with me!

In Memory of Tracy Latimore

(A Credo of Support – Written by Norman Kunc and Emma Van der Klift © 1995).

To watch the videos-

1. Author reading: http://www.youtube.com/watch?v=SKCxwDF-SrI

2. With People First/people with disabilities talking: http://www.youtube.com/watch?v=wunHDfZFxXw

The Language of Us and Them by Mayer Shewin

My friend pointed me to this poem after reading my last post. "Perseverate..." HAHA... I went 25 years without knowing that word and now look--I never would have found this poem! It seems to be targeted so precisely at autistics and was written (I think) by someone not on the spectrum. Does anyone know if Mayer Shewin is autistic? Anyway, it is a GREAT poem, and without further ado

THE LANGUAGE OF US & THEM

We like things
They fixate on objects

We try to make friends
They display attention seeking behavior

We take breaks
They display off task behavior

We stand up for ourselves

They are non-compliant

We have hobbies
They self-stim

We choose our friends wisely
They display poor peer socialization

We persevere
They perseverate

We like people
They have dependencies on people

We go for a walk
They run away

We insist
They tantrum

We change our minds
They are disoriented and have short attention spans

We have talents
They have splinter skills

We are human
They are . . . ?

Back In Time Post #1

There are things that I have been meaning to post for awhile that I have not. Here are 2 stories from a few months ago:

I was talking with a friend of mine who says "There's this person who lives in my building who looks like she has a powerchair but she doesn't; she uses her hands." After some more discussion I said "Oh, that's So-and-so; she has a power assist. I'm getting one. I actually just went for an eval for one and I'm so excited!"

I then proceed to explain to her how they work. There is a battery pack in the "hub caps" [see right] and when you push with the hand rims the chair goes 3X as far as it would otherwise. When this person was a freshman she had a regular manual chair, and then I saw her with these and my mouth just about dropped open. They are SO MUCH easier to manage, but of course don't go nearly as far on a charge as my jazzy does. BTW they fit on any chair brand.

I told my friend how much they cost (something like 6 or 8 thousand $ JUST FOR THE WHEELS, without the rest of the chair, I think powerchairs are 5-8 thousand $ for the whole thing) and her response was

I like my legs.

WTF??? This is someone who has known me 4.5 years. She then said "I wouldn't want to have to use a wheelchair. They cost too much $."

The other story, I was severely depressed and out at the local diner with some other friends in an attempt to get me to eat when my psychiatrist called. He unfortunately wasn't available to call me back any later, so I had to speak with him while I was sitting in the diner. Now of course those friends knew my business or we wouldn't have been out in the 1st place, but I'd rather not have strangers in a diner overhear my conversation.

My psychiatrist told me to increase one of my medications from 150mg to 225mg but these pills don't have a line in the middle. After complaining to my friends about needing to manage to get myself a pill splitter (in an attempt to get one of them to volunteer to take me, being that I was severely depressed and w/o a drivers license) the woman sitting in the booth behind me turned around and told me that "You can get a pill splitter anywhere," and then listed a few stores. Forget about the fact that I already knew this, why don't you mind your own business lady? Oddly, CVS was out when I went.

And here is something brand new:

So I am newly in charge of the OOO Baltimore website, and decided to put a handy dandy google news ticker on there. Not to sound insensitive, because stories about missing teens are serious, but a story popped up earlier this week about a missing teen "who suffers from depression and bipolar disorder." Redundant much?

Would YOU be This Open?

So I went to the first day of my internship last week (tomorrow is my 3rd) and my supervisor said something that I couldn't get out of my head. I've never heard the word perseverating before, and I just heard the 2nd person use it in relation to me. I went to my therapist the next day and she said the comment most likely didn't actually have anything to do with me. Made sense, 2 friends even agreed, but how do I know for sure? The only person who knows what my supervisor meant is my supervisor.

The point of internship class is to talk through these issues. Everyone has to take a turn with something every class. So I said what it was and then proceeded to say, in the same breath, "my therapist said..." Like it's totally societaly acceptable to talk about what your shrink says in a semi professional situation. Because to me it is. Or it should be. My philosophy, as I have stated before, is that if something isn't a big deal, don't make it seem like it is.

I want to take the stigma out of being crazy so I did it, regardless of the fact that I'm sure my professor didn't think it was appropriate (although she agrees with the assessment and said the exact same thing that more then one person has told me). Last semester I started a comment in class, responding to someone who had just used stigmatizing language, with "I'm bipolar and..." She had a serious problem with my self disclosure then, but I had felt the need to first back up my opinion with authenticity.

So would YOU be open with the fact that you have "issues" or would you shy away from it, covering it up with something like "my friend said..."?

PS: BTW yesterday it turned out that the comment in question totally didn't mean anything. So much for all that mental energy...

Sticky Note Wordless-ish Wednesday

I've been meaning to post these, found at the local Wegmans. They say "Masquerading as a normal person day after day is exhausting!" My prefered phrase when I am depressed and trying to appear not so is "Masquerading as a human being is exhausting!" Close enough that I had to buy

Independent Living Philosophy in a Nutshell

To quote one of Maryland's long time CIL directors, from the other day,

We don't do case management. People don't need to be managed -- they can manage themselves. We help people to be able to manage themselves.