#dd community

And I had an entire group of people like a large group of people, just flat-out leave the room when I put a Cocteau Twins song on during a dance.  I feel like the DD community around here has memorized a particular playlist of songs that happen at all DD-related dance events anywhere in the entire state, and anything that isn’t on or closely resembling that playlist of songs and bands is met with “WTF did you do with the real music, I’m outta here.”

I find it way easier to dance to Cocteau Twins, Rasputina, anything that sounds like either of those, certain kinds of old-school R&B, or equally old-school country, or bluegrass, than most of the “danceable” stuff at dances here.  I mean I can dance to this stuff, it’s just not my preferred dance music.

Amusing concert story: At an all-lesbian R&B concert I was part of the very loosely-organized setup crew, and had a front-row seat.  Unknowingly my wheelchair was parked right in front of the main speaker.  The intensity of the sound meant rather than dancing I was compelled to do intense rhythmic rocking.  So... after awhile I notice the drummer has been staring straight at me throughout the entire performance.  I get a suspicion in my head.  I test the suspicion by altering the speed of my rocking.  No matter how I alter it, the drums follow suit and play to the same rhythm I’m rocking at.  She was using me as a metronome.  I spent the entire rest of the concert trying very hard not to laugh.

Amusing conference story:  At a DD sexuality conference, a few people are running around very pleased with themselves because they’ve been able to set me up with another lesbian for the dance.  We start dancing.  I’m doing my usual freeform dancing with heavier arm involvement because I was still in a wheelchair back then.  She’s grinning, trying to make lots of eye contact, and dancing in a way that’s enthusiastic, bouncy, and almost aggressively cheery.  Within less than five minutes, we’ve each sized the other up, gone “WOW not my type”, laughed about being set up by people who clearly didn’t know us, and quit dancing together.

Which I suppose is a fairly ordinary life experience -- being set up with someone so incompatible you both laugh about it --  but when you’re both LGBTQ and developmentally disabled, the chances to even have that experience become minimal.  It’s a good memory to have.

Read the whole thing (click through the link at the top of this post), but here's an excerpt.  This is what DD people can do, on our own, without parent advocates looking over our shoulders all the time.  We got help, but everyone needs legal help in situations like this.  What matters is we only got the help we needed, wanted, and asked for.  We did this -- general-we, the DD self-advocacy community, mostly composed of people with intellectual disabilities.  Don't ever, ever, ever forget it.  

"The one child looked at me and said, 'Help me. Get me out of here.' He was about six or seven years old. His eyes penetrated me. "It scared me, and I thought if I could just get that child outside ... but they are still in that institution. -- Frances Hamblen

The child Frances speaks about, and 2,000 more adults and children — people who have been locked away in four different state institutions for people with disabilities — all will be free by the end of the year 2002. And People First did it.

nicocoer said: there’s yep a dfferent feel to mult dx communitys. (\keybord going) as i spend more tme wth dd comm, There are parts of asd comm that find more unsettlng.

Interesting that someone else has a similar experience.

I had been involved in the DD community for awhile, but at one point I was going through a lot of really horrible crap in the autistic community, and then I went to a DD conference, and I was so struck by the difference that it was like I'd been suffocating in the autistic community and the DD community was like breathing air for the first time.  Not that I'd had no exposure to the DD community before that, but at that point the contrast was so extreme that I started to really notice the differences.

Unfortunately a lot of those differences are at a 'sensing' level where I can see patterns but I can't name them.

Interviews with self-advocates. Note that for some reason the Youtube captions on this one are kind of crappy compared to the usual ones on these videos.  Transcript below:

Hi my name is Shameka Andrews and I’m from Albany, New York.

“Now I understand that you are involved in the Miss Wheelchair America program and I was hoping you could tell us a little bit about that.”

Yeah um well in 2004 my service coordinator who helps me get services told me about this program called Miss Wheelchair program in our state our state program in New York program and told me it was all about public speaking.  And at that time I was going to school, and I had to take a lot of oral presentations and things like that which I hated.  And so she told me about this program and she’s like “Oh I think you should be a part of it, I think you’d be really great,” and I’m like “no no no”.  So after some talking to her a little bit and learning more about it, I decided to go for it.  

And basically what Miss Wheelchair is about, it’s a public speaking competition, it’s a program that promotes disability awareness and education, it’s not a beauty contest, not like Miss America.  And basically the competition has three parts:  There’s your one-on-one judging interviews, where they ask you questions to get to know you and what projects are important to you.  And then you have to give a two-minute speech on what your platform will be for the year.  And then you have to do an on stage interview where you’re asked two extemporaneous questions.  And then at the end of it, whoever has the most points, depending on their answers, gets to represent at their states for the national pageant.  

And I won the pageant the first year in 2004 I came in third in the state.  And I really the program I really give it credit for helping me be the advocate I am today.  Because the first year I ran and came in third, I was competing against two women who had been advocates for a very long time, and as I said I was still in school, had just graduated from college, and the other woman she had owned her own business and everything.  And I looked at these two women and thought what the heck am I doing here, how can I compete with them?  And now I can really say that when I ran again, in 2006 and actually won the title Miss Wheelchair New York and went on to Little Rock, Arkansas to represent New York in the national pageant and it was so great, meeting all these worn from around the world, advocating for their different causes just learning so much just like here at this conference, just learning from people, learning how they did it, learning from their experiences and being able to share my experiences.  

So now I help other people in our state program and promote the program, and just letting other girls know about it and increasing awareness.  And our ultimate goal is to have all fifty states have a Miss Wheelchair program and have it televised on TV like all the other pageants that you see.

“Cool that would be great.  Can you just talk a little bit about the importance of public speaking in self-advocacy?”

Well and speaking up for yourself in public speaking it’s just so important you know cuz nobody knows what you want better than you do, correct?  So you know they always say you’re not going to get anywhere if you don’t ask for it.  Part of my advocating for myself I grew up not with the mindset of if there was something I couldn’t do for myself and by myself then I shouldn’t do it.  And learning about being independent, learning the mindset of one of the biggest things for people with disabilities is being independent, a lot of people think that being independent means you have to do everything by yourself.  But I’ve learned that being independent also is saying to yourself that I don’t know everything and I can’t do everything and I need help.

“That is a great point thank you for sharing that.  Is there anything else you’d like to tell us about the program?”

Interviews with self-advocates.  Captions available on the Youtube videos, transcript below:

My name is Jackie Sue Hope, I live in Florence, South Carolina.  I’m originally from Pennysylvania but I moved — I moved around the time my mom started working for the Valley Forge company but she moved to South Carolina — it’s called Amana, and she works at a flag company there.  

And at first I was kinda scared because I didn’t know anybody from South Carolina.  I worked at the hotel.  I did all kinds of certain jobs down there.  Now I’m working at Braxton-Collins which is a place for adults with special needs and I do the phone — I used to be the president for Our Voices Count Too.  I do the committee, and I do the personal outcomes, and I do Special Olympics.  

And the important thing is that you want people to be nice to you because you don’t want nobody to be mean because it’s not right because people should be treated as equal and they should respect one another and not hurt each other for no reason.

Cause I have been nice to people but sometimes they don’t understand what I’m trying to say to them.  But I try to solve the problem by myself but I like to help, I like to help everybody.  But sometimes they take advantage of you because you’re different than they are or if you have money or just a  friends to talk to — they take advantage sometimes.

“Jackie, what can someone do if someone is taking advantage of them, or being mean to them?”

Tell the staff, because the staff is always there to help you when you get upset or if you have a problem with somebody you can always tell them because they’re a lot of people that have trouble with different things but the staff is always there to give a hand.  And I always appreciate my staff that I work with, her name is [???] and I work with the [??????], she’s part of self-advocacy for [?????].

And sometimes when I have problems I try to go to the staff or to my family, because my family supports me very much.  And I enjoy talking to everybody, no matter what they look like or where they’re from or, I respect everybody’s feelings.  Yes sir.

“You mentioned a lot of jobs that you have, can you tell us about how you got your different jobs?”

Well, when I first moved down here, I went to Florence Matthew Wildby Center, they told me about the hotel job, and I was struggling with the beds, so they kinda moved me around from different things to do, because the spreads were so hard to get on the bed and sometimes you had to bend down and clean up and everything but it’s a struggle because we don’t have much work, we don’t get paid a lot of money, but everything counts in our state.  Because our state is nice and everything, but I just wish I and more money to do things to support my family, because they have regular jobs but I don’t,  because they were born normal, but me I’m not.  Because I have special needs and nobody else in my family has special needs except my cousin.  Evan, now he has special needs too, but he’s autistic.

“Now when someone has special needs, what are some things they can do to find a job, and to earn money and to just have a good life?”

They could find a job coach, or they could find a staff to talk to, or they have a service coordinator they could talk to.  But sometimes it’s so hard to find a job these days because the economy is not going so well right now.  But it would be nice if we could have jobs that could give us more money, but money’s not everything.  It’s about the people you work for or the friends you have, that’s what it’s all about.  It’s not always about money, cause money’s not everything.

“Can you tell us about some of your friends that you have?”

Like I have Jaquetta she’s from Lake City, my friend Christina’s from Lake City, my friend Shirley is from Lake City, and I just made a new friend out the door — his name’s Terry.  And I met — I mean I’ve met a lot of people all my life and I enjoy them so much I appreciate everybody that are helping me out and sometimes I wish things weren’t so hard.  Sometimes I wish I wouldn’t struggle as much, but i keep on going no matter what happens.  That’s what I’m here for.

“Here at this conference?”

Yes.  To learn about friendship, to learn how to help a hand when they need help or somebody to talk to when they get upset or frustrated.  Yes sir, and I’m doing a presentation tomorrow, it’s called “Express Yourself” It’s a good presentation, me and my friend Jaquetta is going to do it tomorrow.

“Then the last thing I want to ask you is what do you do to support your friends?”

I support them because a true friend always understands where you’re coming from and what your family is like and I always appreciate everybody helping me.

“How do you help your friends?”

Interviews with self-advocates.  There is captioning on the Youtube videos, transcript below.

My name is Johanna Wortman and I’m from St. Charles, Missouri.  And I’m vice president of my chapter, and I’ve been president the last several years of my chapter off and on.  I’ve been involved in several other… well, just to tell you about myself, I am involved in other things outside of People First.  I volunteer at the St. Louis Zoo, I attend Harvester Christian Church, I’m in the choir, I sing alto.  And I’m also a member of the St. Charles Lions Club.  And I now am — I signed up to be a member of SABE, so I’m a member of SABE.  And I’m pretty active in my community and I have a job where I am my own boss, and I have several candy machines throughout my area in St. Charles, and I go shopping for an elderly lady in the community once a week, and I share grocery shopping with another customer/friend of mine on Tuesdays it’s an [ITA?] run, and I’m just real involved in my community and my area and I have lots of friends that I do things with.

“You are really involved.  Can you tell us why you think it’s so important for self-advocates to be involved in their community?”

To make people aware of people with disabilities, and let them know that we are people too, and and to be able to fit in, in the community.  I just have so many great friends out in the community, they treat me like they want to be treated and.  I’m also involved in the regular church bible study class that I’ve — it’s the first time I was asked to join church bible study class ever, so it’s kind of a neat thing - me and my staff are going, attending every Tuesday.  It feels good to be in with normal — the normal population, and meeting other people in the area that live around you, doing things.  

“Can you tell me a little bit more about your job where you do the vending machines, and how you got involved in that?”

My living situation — my company that supports me all of the way, used to have a company called “At Your Service”, and they started — where people had all kinds of their own business; some people had wheelchairs to go, and others had did recycling of aluminum cans, some did crafts, and one of our biggest things was we made our own laundry detergent and perfumes, and bars of soap, and candles and stuff and that was going pretty well.  And I had my hand in that too — I had a shampoo that was for sale in our store — we had a store that we had everything that was for sale that everybody made and stuff in the At Your Service.  I also had a soda machine at the ? way office, and I had a couple of snack boxes that were on the honor system, one at the DDRB office and one at another agency in the St. Louis area, and two candy machines out in the community.

“Wow, well Johanna, thank you so much for sharing your busy, busy schedule with us.. it’s amazing all the stuff that you’re involved in.”

Yeah but now we don’t have At Your Service no more — they cut the company out of [world’s way?] they have another company called Community Integration.  But some of us that had successful businesses when At Your Service was still up ad running, they allowed us, once a week, to do our businesses, so we still are flourishing, some of us, in our business accounts.

“Excellent.  That’s great.  Is there anything else you’d like to tell us about?”

Interview with John and Juliana (John is a self-advocate, Juliana is his support worker and she translates for him vocally).  There is captioning on the Youtube video.

Transcript:

My name is John Britton, and I’m from Phoenix, Arizona.  

“Okay and John I understand that you have a lot of really neat things going on in your life, but could you start by just talking about your job, your employment?”

One day, I was in Mark Center and I asked them to help me find a job.  But they said “Okay.”  They kept saying “okay” to me. I said “now you are fired”.  I fired them.  And told my friend and he said “Hey, will you help me find a job at Target?” So I said “Let’s go fill out some paperwork.”  With them.  And they called me, they wanted me to come in for an interview.  And then they said “We have nothing for you.”  And I said “Hey, I’ll make a deal with you.  Give me 90 days, if you don’t like me, I will walk out of here.”  And they said “Okay.”  I am still at Target.  Tomorrow, Sunday, will be my tenth anniversary.  

“The other thing that I thought was really interesting about your story was — I know I’m going to get the words wrong — but basically, you manage all of your own care, is that right?  All of your own… can you tell me about that?”

Yes.  I am one of the owners of a human service co-op and she is one of my workers and friends.  

“How does this service co-op work?”

We decide what we want and tell them what to do.  

“That’s excellent.  How many people are in the co-op?”

Nine members.

“So how do payments work in the co-op?”

Juliana: The payments are just like any provider-run agency where it goes through management and then they handle all the paperwork between the DD system and the agency.

“Okay.  That’s really a neat program.  The other thing I want to ask you about is I know you’re from Arizona and all kinds of recreation is going on in Arizona.  What types of recreation and activities are you doing?”

The movies, and going out to restaurants, and baseball games.There’s one thing that I’d really like to do again; I want to jump out of an airplane again.  I am a risk-taker.

“I can tell.  That’s great.  Well I hope you get to do it again.  One last question that I have for you.  I think it’s really important that self-advocates see that they can own their own homes, or at least live in their own homes.  So I was wondering if you could talk about your home, and your living situations.”