About a month and a half ago or so I met my new most favorite person in the world (yes, you are) through a bunch of random phone calls. One of those six degrees of separation things. I never expected her to live a mile and a half from me. Both she and her husband are die hard ADAPTers and she works on getting people out of nursing homes and back into the community. Maryland has the laws that say Medicaid has to pay for it, and people shouldn't be there. But that's another post for another day. She knows all of this cool stuff and has kidnapped me repeatedly and dragged me all over the Baltimore area. Back in June I went to my first Cross Disability Rights Coalition meeting. Two weekends ago we went to a Barak Obama supporter picnic. This past weekend we went to an ADA day picnic at Fort McHenrey with a bunch of nursing home escapees (I just love that term. It puts the image of a jailbreak in my head). Thursday we're going to an independent living conference. And as it turns out, we don't even have to leave her parking lot to have an adventure . She even sends me emails about all sorts of interesting things such as this, this, this, and this.
Yesterday I finally read an email attachment that she had sent me a few days ago. It was an essay about people first language (PFL) written by one of her friends who works for the Maryland Department of Disabilities. Back in January I was going to write a post entitled "My Rant on People 1st Language" but there were too many other things to blog about and I wasn't sure how to put my thoughts into comprehensible statements. I guess this is a comprehensible statement: I'm just not a fan of PFL.
I get people's position on PFL. Really I do. I even teach PFL to my peers. It's the best I can do to combat the horribly offensive textbooks we are subjected to reading. It does make sense, just not for me. As the essay says, " While one might claim the term 'people with disabilities' puts 'people' first, the converse could also be argued: it puts 'disabilities' last. No other oppressed group in the nation uses 'people first' language. African Americans, Latinos, women, gays and lesbians – all use the descriptive term before 'person' (if they use the word 'person' at all). The one conspicuous exception, 'people of color', never really gained much traction."
I am not a "person with cerebral palsy" or a "person with bipolar disorder," I'm Cheryl and I happen to have CP and am bipolar. Now that I think about this more as I'm writing, doesn't "person with" still draw a lot of attention to the disability(ies) itself? and isn't the point of PFL not to? Why do we have to be "people with?" Why can't I just be Cheryl? What's wrong with that?
But that's not my original reason for hating PFL. I hate PFL because it's a mouthful to say/type. It's just plain awkward. But the real reason that I hate PFL is the same reason that the essay states. It devalues who I am as a person. In second grade we had to make these flowers out of construction paper and each petal had to have an adjective about ourselves on it. One of mine was handicapped. Even then, when I shied away from other PWDs, (see, I still use PFL even though I don't like it) I still identified as a PWD on some level. It just happens to be who I am, just as much as being a woman is, so why can't we give this adjective the same status as others? I wouldn't be who I am if I didn't have CP; if I hadn't had 7 surgeries, spent so much time in therapy, and was sometimes forced to find more creative ways to do things. I wouldn't want to work as a child life specialist or in an independent living center. Somehow, to me, PFL is saying that there is something wrong with this, and I don't like it.
Tuesday, July 29, 2008
Rethinking People First Language
Wednesday, July 16, 2008
Wheelchair Accessible Taxis Coming to DC!
GOVERNMENT OF THE DISTRICT OF COLUMBIA
FOR IMMEDIATE RELEASE
June 19, 2008
Contact:
Eve Hill (202) 724-7525
Mat McCollough (202) 727-6744
ACCESSIBLE TAXICABS WILL BE AVAILABLE
TO WHEELCHAIR USERS FOR FIRST TIME
Three Companies Receiving Funding to Provide 21 Wheelchair Accessible Taxis in the District
The National Capital Region Transportation Planning Board (TPB) approved funding to bring wheelchair accessible taxicabs to the District of Columbia for the first time. The approval of funding is based on the collaborative efforts and support from the DC Taxicab Commission and the DC Office of Disability Rights.
Presently, wheelchair users cannot rely on the 5,700 taxis available in the District, because none have accessibility features, such as ramps or lifts, to allow passengers into the vehicles. With the new funding, three taxicab companies will provide a total of 21 wheelchair accessible taxicabs.
According to Eve Hill, Director of the DC Office of Disability Rights, “Residents and visitors in the District have been asking for wheelchair accessible taxicabs and now we will be able to meet that need. In a city that relies heavily on taxi service, these taxis will mean greater freedom for people with disabilities.”
Purchasing of these vehicles is made possible under the New Freedom programs of the Federal Transit Administration (FTA). TPB will provide approximately $1 million in federal funding, matched by nearly $200,000 in funding from the DC Taxicab Commission. Taxi companies of Yellow Cab of DC, Liberty Cab, and the Mohebbi Group will provide 7 accessible taxicabs each. A proposed centralized dispatch system will also be funded allowing passengers needing a wheelchair accessible cab to call one number and the closest available cab will be dispatched.
"Providing accessible taxi service to the citizens of the District of Columbia and its visitors is one of our top priorities," expressed Leon J. Swain, Jr., Chairperson of the DC Taxicab Commission, Chairperson. Mr. Swain commended the actions of TPB as being "a real victory for DC. and the entire region".
Accessible taxicabs are anticipated to make their initial appearance in the District as early as January 2009.
IL Conversation on July 30--Resolution to Revolution: Standing Against Violence/Abuse
You are invited to participate in an APRIL
IL Conversation
July 30, 2008
3:00 - 4:30 pm Eastern Standard Time
Call the APRIL Bridgeline number: 218.339.2699 - pin code 922899
This is not a toll free call. Your regular long distance charges will apply.
There is no registration fee.
Topic:
Resolution to Revolution:
Standing Against Violence/Abuse
Facilitators:
Stephanie Sanford, Prairie IL Resource Center
Leslie Myers, IndependenceFirst
Roberta Sick, Partners for Inclusive Communities - UAMS
Join us to:
· Learn more about efforts occurring in APRIL and NCIL regarding ending violence and abuse of people with disabilities.
· Hear about the history of the Violence Against Women Movement and its similarities to the Disability Rights Movement
· Ask questions about the CILs’ role in the disability rights/antiviolence movement.
· Discuss how we can build CIL’s involvement in ending violence against people with disabilities.
· Share ideas and experiences from a CIL perspective and discuss resources for future training.
Call in from a quiet location and join the discussion or feel free to just listen in.
IL Conversations is a CIL-Net presentation hosted by APRIL in cooperation with ILRU and NCIL, and provides IL practitioners with an opportunity to talk with colleagues about the nuts and bolts of running a center for independent living and providing core and other services, as well as to address broader state and national issues impacting CILs, SILCs, and people with disabilities. Watch for our next IL Conversation Announcement! Different facilitators who are currently working in the field will join us to lead the discussion, answer questions and refer participants to additional resources.
Again, to join your colleagues in discussing this IMPORTANT Independent Living issue, call the APRIL Bridgeline,
218.339.2699 - pin code 922899, on July 30 at 3:00 pm EASTERN STANDARD TIME.
PLEASE JOIN US!
For more information, call:
Kathy Hatch
Training and Technical Assistance
APRIL and the IL Net
390 Crepe Myrtle Drive
Greer, SC 29651
864.670.9067
Monday, July 14, 2008
The Empowerment of Choice
Yesterday I did one of the coolest things ever. I walked to Starbucks. And then I walked to Barnes & Noble too. The whole time I was walking there all I could think about was how cool it was that I just decided I wanted to go there, got dressed, grabed 2 books, my wallet, keys, phone, and crutches, and headed out the door. I didn't have to tell anybody where I was going, why I was going there, how long I was going to be there, or wait for, ask, or beg someone to take me there. I just went. It was a much better thing to do then sit in my apartment alone all day. I think if I would have done that I would have lost my mind, even though all I did was read and I would have done that anyway, even if I didn't go out. A change of scenery is always good for the mind.
When deciding to go out I had to first plan out my route. I couldn't cut through buildings on a Sunday, so I had to figure out how else to get there. Then take an inventory of all my different mobility aides to detirmine what was best to use in this instance. My choices were:
Nothing (bad idea)
- UCBs (to the right)-- they look something like that, except they end before the toe and they're purple, not pink
UCBs and crutches (crutches to the left)-- mine are black w/polka dots that I painted on last fall
AFOs (to the right)-- I think that's the closest thing to what mine look like, except that they only have one foot strap and they're supposed to look like jeans.
- AFOs and crutches
Jazzy (to the left)-- that's my chair model in teal like mine, but I have a black seat. Isn't it pretty?
I think those were enough choices, don't you?
The thing about choices such as this one is that you have to make it by yourself. There is no possible way that someone could have made it for me. A few months ago someone who should know better started a sentence with "People like you..." in relation to bipolar issues I was having. Don't you just hate that? There are no people like me. CP is so variable that it would be impossible for anyone to tell me which one(s) I should use. No one has my exact spasticity issues. Everyone with CP has fatigue issues, but some people get more tired then others. And in response to that person, having CP and bipolar disorder is a whole other ball game then just being bipolar.
So yesterday I needed to decide where to go and then what to use to get there. It all depends on the type of pavement, whether it was relitively flat or extremely hilly, the weather, what I did yesterday or even the day before, and what my plans were for today or tomorrow. Deciding whether or not to take the chair to the library today wasn't such a thrilling decision, but somehow the act of deciding to wear my UCBs and take my crutches to Starbucks to go read was thrilling. I think that was because there was more to consider in going to Starbucks and it was also out of the norm of my daily activities, so it wasn't as automatic a decision as today's decision was.
This summer a lot of things I have done have been rather empowering. For example, meeting a friend for a "secret excursion" and dinner down the street or meeting a friend at the mall on a rough day, was empowering.
Deciding to ditch my new laptop and force my shrink to hold the power cord for ransom (I can't get it back until April I decided) was empowering because she never asked, forced, or coerced me to give it to her. Rather, I simply walked into her office, handed it to her, and told her I didn't want to be anywhere near it. And since I made her take it, I decided when and how I'm getting it back from her. Pretty much all by myself.
Making doctors appointments specifically when and where my mom can't go is empowering. I'm 23. Most 23 year olds get themselves to their own appointments. Why should I be any different?
Now I feel like a 2 year old. 2 year olds do 2 things. They ask "what that" so many times that I might want to scream, and they want to do everything themselves, whether or not they really can or whether or not it's safe. They learn from doing and exploring their world. So do 23 year olds apparently. I've been relishing in the self-detirmination--deciding, what I want, when I want it, and how I need to go about getting it—it’s taken to learn that.
It's something I think most adults take for granted--not having someone telling you what to do all the time. Or even deciding what it is you want, but not being able to do it because someone else thinks they know what's best for you, or just doesn't want to/feel like helping you. On the subject of help, achieving self-detirmination doesn't mean that you do everything by yourself. That's impossible; even for ABs. It just means that you're in charage of the help that you get. It means that you're directing it. As human beings self-detirmination may very well be the most powerful tool we have. You feel better about yourself and I bet accomplish more when you have control over your life. Because I am a PWD self-detirmination took longer to achieve. I still don't drive, so deciding where I wanted to go and when I was going to get there always revolved around my mom's schedule, for example.
The most empowering thing from yesterday was that I was physically able to choose to walk to Starbucks and then to Barnes & Noble and back. It was about a 2.5mi round trip and not something that I was physically able to do 2 years ago when I tried, or even last year I tried to go half way. Both times I ended up feeling like death. But yesterday I thought I could do it and decided to try. The name of the game was let's see how far I can go before I sound like I'm about to lose a lung. I never did. My breathing never went above normal from my extra energy exertion. It was cool because if I was with someone else they might not have let me try and I would never know that now I can do something I used to not be able to. It was cool because I chose to walk all that way and forgo the gym today. Next time maybe I will choose to take the chair so that I can walk to class instead.
More and more as I am getting older I am given more responsibilities. Just like everybody else. But unlike everybody else, each time I am either given a choice or forcefully take it from someone (I can be very explosive at times) I start to appreciate my choices that much more. Even a choice that may seem small to an outsider: crutch it or chair it? That's really rather big.
Thursday, July 10, 2008
SEX: The Elephant in the Room
Over the last 8 months that I have been blogging here there has been a fair amount of discussion on sex, as there should be. Everyone loves good sex, don't they? But no one ever wants to talk about sex. In fact I just took my final exam for adolescent psyc, where of course there were questions about sex. How are young adolescents exposed to sexual information? Their friends--other 12yos. What does a 12yo know about sex? Nothing really. Where do those friends get the information that they get? 15 yo siblings/friends. 15 yos may very well be having sex, but do they really know anything about healthy, safe sexual relationships? I highly doubt it. In my opinion, the ones who do are the ones that at least wait until college to have sex. They're the smart ones. Pregnancy, STIs, they don't seem like they'd be much fun. Where are parents and/or other adult role models?
Add disability into the mix, and life becomes tragic. To me at least. I've been bipolar for the last 8 years. Love my meds, but I only got those this last winter. Most of the time I've been depressed. Usually just a little depressed, but I've had my share of bad episodes as well. Why am I depressed? SEX. On the list of things that make me depressed, sex would be #2. Sex on rare occasion has increased my level of depression pretty drastically. Well, not sex, I'm misstating myself a bit. Desirability. I wasn't interested in sex at that time, I just wanted to be sexy is all. And what is wrong with a 16 yo wanting to be sexy? Nothing. It's perfectly healthy. I hope to work with teens who have complex medical needs. If one of them comes to me and isn't experiencing the same issues I did, that's when I'll get worried.
I wrote another post about sex back in January. In it I spoke a little about not feeling desirable because of my intense belief that all guys would perceive me as a huge burden. What 16yo AB boy would ever be caught dead with a 16yo gimpy girl? And forget about finding a crip, there was no way I'd even consider doing that. This is the biggest load of crap, but I walked around with it floating around in the back of my head for years. That'll make somebody depressed. It's ableism at it's finest, and I have peer reviewed journal articles to prove it.
Your final paper in Research Methods in Family Studies has to be on domestic abuse. It is a much wider topic then you think at first glance. There were 14 people in the class, and I don't think anybody had the same focus. My paper was on physical and sexual abuse of woman with disabilities of course. An estimated 25-33% of AB woman are abused while an estimated 40something- 60something or 70ish% percent of disabled women are abused. That's double. It's a very serious problem. There are several reasons. I turned in that paper over a year ago, let me see if I can remember.
- Lack of suitable PCAs. Some PCAs demand sexual favors in order to help you shower or whatnot. Or PCAs or family members caring for you start to burn out and take it out on you. They beat you. And if you can't shower or even get out of bed by yourself, what are you going to do? You're going to take it. I've heard enough griping on here about people's PCA issues. If you fire one it's going to take effort to replace him/her. Another reason to stay with abusers is our lack of financial security. At least 70% of working-age PWDs are below the poverty line. If your dad's hitting you but he makes a 6 figure salary and you're on SSI, are you really going to leave?
- Lack of education. This refers to general education, sex education, and cognitive levels. People don't put disability in the same sentence with sex. We don't get taught about sex because we shouldn't be having sex. In terms of cognitive levels, you might just not know that being molested is wrong. You might think that's what people do. People who have higher cognitive levels are much more likely to pick up on this whether or not they have received the best sex ed.
- I'm not sure if there was another reason,or if I combined reasons. I'll have to look at my old stuff. The last reason, the overwhelmingly highest predictor of partner abuse according to my research, was socital devaluation. Just plan old ableism. I'll stay with this guy because if I leave him I'll be all alone. Who would want me? I don't deserve anything better then this scum, so I'll take it. He's all I can get.You, me, and plenty of women in the 5 studies I read will all admit to it. There's a reason that this article is on this site. I'm glad I value myself more now.
I started this post in response to the article posted yesterday, but have decided to respond to all 3 news articles floating around this site:
Is it OK for Disabled People to go to Brothels?
School Helps Disabled Teens Find Love & Sex
Hospice Helped Man With Duchenne Muscular Dystrophy Lose His Virginity
Here's a question, all 3 of these articles are from British news. Why are the British so much more open about dealing with issues related to sex? Why aren't Americans or Canadians tackling these issues as well?
The article from yesterday hit a bit of a nerve with me. Then I remembered the other articles. I just don't agree with PWDs going to prostitutes. If you're competent enough and have the capacity to make decisions of this nature for yourself, save your money, go find a good shrink and a sex therapist and deal with all of that negative self-talk in your head. Then go out and get a date. I know, there are some people on here who are thinking I'm from mars. It is just not that easy. No, no it's not. I'm 23 and I haven't gone on a date yet, never had my first kiss. Residual effects of spending adolescence feeling awful. Right now though I could care less. All I want more then anything in life is to pass my 50hr placement this time. Then I'll go out and find my mid-20s Jewish uppity crip (specific aren't I?) and have my way with him. After I pass my placement.
But I digress. What got to me was that Nick Wallis is only 22. What does it say about society that people give up that young? That they think their lives are that hopeless? "It was not emotionally fulfilling, but the lady was very pleasant and very understanding. I do not know whether I would do it again. I would much rather find a girlfriend, but I have to be realistic." Doesn't that say it all? I want to have sex. I have wanted to have sex for some time. But I am not going to pay someone in order to have some. I'm worth more then that. I will find my Jewish uppity crip eventually and then things will go however they go.
I sent the link to my adviser yesterday. She hasn't answered me yet, and there is a decent chance that she won't, that my question to her was crossing some sort of boundary. I tried to phrase it professionally being that this is my area of interest career wise and she has experience working with children/teens with chronic medical needs. "Wondering not what you think about this, but rather what you think can be done about this... Self esteem is a big issue with teens with chronic medical needs I think.... So the question is, how to work with teens so that they aren't getting depressed? ... I think [teen self-esteem/sexuality is] a major problem that needs some serious attention." Disabled teens I mean.
I do applaud the staff at Treloar's College for instituting the policy that they did. Can't we have more of that? I think, personally, that it would go a long way towards solving the problem.
Monday, July 7, 2008
My Blog is Group Therapy
Your Blog Can Be Group Therapy
http://www.cnn.com/2008/LIVING/personal/05/07/blog.therapy/index.html
I got to this article randomly last night through a combination of allpost & the Disability Blog Carnival --which I am hosting right here in just over a month. Topic chosen, but under lock and key... Thought I would torture people with that tease of a shameless plug. You know 6 degrees of separation? This article took exactly 6 clicks to get to. It's from May. Here are some excerpts:
"A 2005 survey by Digital Marketing Services for AOL.com a found nearly half of the 600 people polled derived therapeutic benefits from personal blogging...
"Writing long has been considered a therapeutic outlet for people facing problems... But it's the public nature of blogs that creates the sense of support. Reading someone else's blog can be surprisingly beneficial, says MightyGirl.net blogger Margaret Mason... 'Blogging can create an instant support system, especially at a time when you might not have the energy or resources to seek out people who've shared your experiences...'
"John Suler, a psychology professor at Rider University in New Jersey, [says] 'going public with one's thoughts and experiences can be a self-affirming process.' He and other experts say blogging shouldn't replace face-to-face counseling -- although it can complement sessions when a patient shares their writing with the therapist... 'It's a form of group therapy,' says Leah [a social worker and writer of EveryoneNeedsTherapy.blogspot.com]. 'Not only can you express your feelings, but you can get comments, and that creates a dialogue.'"
My Blog is Group Therapy. Is Yours?
I wasn't intending to go out and find this article. In fact I wasn't intending to go out and find anything. It just so happens that I stumbled across a gem in only 6 clicks. It says what I can't always say to people--the people who think someone is going to come after me with an axe, or the people who read this on facebook and find a big problem with the fact that I focus on only one subject. To those people I want to say, HELLO!!!! This blog is hosted on www.disaboom.com . What else is it going to be about? If I had intended to cover a wider scope, I would have hosted on blogger, typepad, or wordpress.
Those people, and other people I know in real life who do not read this blog, have some huge problem with the fact that over the last year and a half, more and more of my focus has been on disability. Well, to give a very simple answer to their seemingly simple, but actually very complex question of why, because I'm 23, THAT'S WHY.
They think my focus is on disability because I seem to have this need to draw attention to my differences and use them to my advantage. Correct me if you're reading this and I've got you wrong. Truth is, the more I immerse myself in disability, the more I DON'T want to do that anymore.
Really, seriously, this is all just simply because I am 23. Aren't co-eds supposed to be liberal go-getter tree-huggers who go attacking companies for using animal testing, or take a strong stand (either liberal or conservative) on the war, abortion, or gun control, or a plethora or other hot button topics? I've only gotten so deep into disability to fulfill my natural duty as a red-blooded 23 y.o. American co-ed. I don't have any ulterior motive. Unless having a strong need to educate 
I HEART CRIPPLES, AND I AM VERY PROUD TO BE A CARD CARRYING SPAZ.
OK???
[picture description: Timmy & Jimmy, from the Krazy Kripples episode of Southpark]
It was roughly a year ago that I stumbled across BADD 2007 in trying to research ableism. And then I forgot about it and found it again in Sept. And I hermited (is that a word?) myself in my room for 3 or 4 days and just read blogs, mostly BADD postings, under the guise of 'I have to. There might be something good in here for the workshop.' At some point I came across DBC and read some of those too. And I liked what I read.
It didn't take long for me to realize that I needed the disability blogsphere to play a part in my life. Partially because I can only stand to hear so much worry from people who think the focus of my life is misguided. Mostly because I haven't found a single disability blogger who is in the closet. If you're "disaphobic" you won't be hanging with us cool gimps (or our allies, I'm cool with anyone who's cool with us).
[picture description: DISABLED & PROUD]
People are still going to find it hard to understand how I could feel a close commoradery with a bunch of people I'll likely never meet. I'm not sure I could ever really explain that to someone. For those of you reading through facebook or a random google search, maybe this will help. When anyone finally becomes out and proud, or starts on that journey to become so, there is just this innate magnetic attraction towards others like you. Especially when you've always been different. When we can crack jokes about wheelchairs and artificial limbs, we're finally on the inside instead of off on the side just watching-- watching all the other kids play soccer or learn to drive or get to "second base." It always feels nice to be part of the incrowd.
With disability, this is harder to achieve because we are still being encouraged to pass as much as possible, even by people who are well-meaning and seem to "get it". We're also still being denied the right to claim ourselves as a minority and a culture. So there are just less of us who are out. Personally, I prefer the uppity intellectual crip, so that limits connections even further for me. The club is even smaller.
So then, well, I don't drive, for example. Fictitious person John, a quadriplegic, who does drive, can't get into fictitious person Suzie's house (say she has aspergers) because there are stairs to the front door. But if I could only get to Suzie's house, I could get in, because those stairs have a railing. OY!!!
[picture description: stairs with a red circle/slash and the words barrier removal team]
"Blogging can create an instant support system, especially at a time when you might not have the energy or resources to seek out people who've shared your experiences." To Margaret Mason: YOU GO GIRL!!! The woman summed up this whole long post in one sentence.
Saturday, July 5, 2008
Click Here, There & Everywhere. Or, the Curse of alltop.com (with a Bit of Britan's Missing Top Model Mixed In)
But I have a problem with Alltop. It works too well. I LOVE IT! I don't really read offsite blogs other then on carnival day. It's too burdensome to click here, there, and everywhere. Disaboom makes it so easy. A bunch of great blogs all in one spot. Here comes Alltop and it does the same thing. WHOO HOO! How great!
Right... until you actually start using Alltop. It sucks you in like a vortex, and it hasn't even been around for a week. Alltop certainly works. Yesterday through Alltop I discovered a great blog by Patrica Bauer, Disability News. It's also a very comprehensive site. A one stop shop of all things great in disability news. By all, I really do mean all. Alltop lists your last 5 posts and an excert from each one. Patrica's last 5 posts were all from between 6:04 and 7:47 this morning. And they all sound incredibly interesting. Now how is a girl supposed to keep up with that? Especally in the fall when I have a jam packed schedule.
Here comes what I am going to call the "click here phenomenon" or maybe the "If You Give A Mouse a Cookie phenomenon." You see, all I did was click on the folder in my bookmarks toolbar labeled Blog Roll. From there my first site is Alltop Disability. Seems innocent enough. Except that once I was on Alltop I then clicked on Patrica Bauer's blog. The first post listed was about the new British reality show Britain's Missing Top Model. Under her Headlines Column is listed a link to another post of her's that links to the youtube video below. In the very beginning of the show there is a voiceover from one of the judges. “Disability has a natural place in life, so why shouldn’t it be a part of fashion?” That certainly caught my attention. So of course I was compelled to watch the entire 1st episode, contained in six different parts.
The video is not captioned even though there are 2 deaf contestants. That pisses me off.
One of the contestants is a part-time wheeler. You'll notice if you look at the end of part 5. For most of the show she was walking, and then all of a sudden she rolled in to meet with the judges. I did a double take and had to rewind it. There was no mention of it in an interview or a voiceover or anything at all. All I can say to that is YES!!! If you're a walkie or a full-time wheeler you'll never feel what I feel, being that I have an ever changing combination of crutches, AFOs, UCBs, my Jazzy, and my rarely used Quickie. In the summer I like to wear my Naots and then use absolutely nothing at all. You see, as most of you know, to the AB world disability is black and white. But in addition to the "people with invisable disabilities are lying" crap is the "people only walk or don't walk" crap. The "sometimes walk" thing doesn't exist. People don't know what to do with it. So the fact that a part-time wheeler is getting TV exposure, and that it just is what it is, does fill me with a bit of glee.
From youtube I then went to the show's site because I was curious to find out what this Disability Bitch thing was. From there, I clicked to see Miss Bitch's blog. I read about how Disability Bitch loves Chinese disability awareness. Not sure how I feel about that. I also became her fan on Facebook. And then somehow, I went to check out Spastic Fantastic, by Laurence Clark. In that post Laurence linked to a 2003 Ouch! survey of the 10 most offensive words. Can someone please explain to me what a window-licker is? I was about to go off on a tangent about the word special, but that deserves it's own post.
Alltop became my "cookie" today, and I'm sure I had better things to do. What am I supposed to do with Alltop then? Pretend it doesn't exist. I can't do that, I like it too much, and I like blogging too much. But it is certainly a problem for me.
Students Work on AT for the Blind, Google Maps, Employment Sites, & Creature Discomforts
A few small stories for you:
Usability Meets Security: Professor, students address challenges facing blind computer users
http://www.towson.edu/main/abouttu/newsroom/usability031408.asp
"As crucial as they are to thwarting spam, CAPTCHAs present a formidable obstacle to blind or visually impaired users." So 2 professors and an undergraduate computer information systems major at Towson University set out to find alternitive CAPTCHAs "...that would be equally usable by people with and without impairments."
Read the article to find out more.
Sight for the Blind and Speech for the Deaf: AProfessor Turns Cellphones into aids for the Disabled
http://chronicle.com/free/v54/i42/42a01302.htm
"Ms. Narasimhan, an associate professor of electrical and computer engineering at Carnegie Mellon University, soon became the hub for [4] student research projects that develop technologies to assist the disabled by doing such tasks as identifying buses or translating sign language into spoken words. Their creations turn the most ubiquitous device on a college campus — the cellphone — into an independence-enhancing machine."
Besides the project mentioned above, the other 3 projects are technology that will allow people (any person) to not only access local bus schedules from their cellphone, but also detirmine whether busses are running on time, enable cellphones to read UCP codes so that a blind user can easilly identify a product, and allow redially avalible cellphone cameras to become currency readers.
2 of these projects caught my interest. The first is the currency reader, being this is a hot button issue at the moment. The second is the ability to pull up bus schedules and current locations at a moments notice.
Some people I know don't understand why I don't use the bus at all. Becaue I qualify for paratransit, all I have to do is flash my yellow ID card and the bus is free. Bus schedules are why. My eye tracking is bad. I don't see anyway that I can read a bus schedule. I'd probably have to have it read to me. If I were to go to the same place at the same time of day repeatedly, well then I'd probably have that memorized, but what if that bus doesn't show? Then what? I won't know any of the other times. Completely randomly, recently I came to know that in addition to driving dirrections, google maps will complete your trip by public transportation, including such details as walk from your building to X corner for the bus, and how many minutes it takes to walk there. Plug in the time you need to get there by and they even give you 3 different options to choose from. That's great! If I miss the bus, I have the next one already written down. But what if I go somewhere and have no idea what time I'm leaving? Then what? If I had something at my fingertips that could read to me the next bus, I'd take the bus all the time.
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Recently I got an email with a link to this site. It says the employment sites are targted at college students, but the job postings I saw looked like anyone could appy.
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And lastly, I'm on the update list for the Creature Discomforts Campaign, even though I don't live in the UK. The email I got said, "Leonard Cheshire Disability unveils six brand new Creature Discomforts characters online [last Thurday] ... From next Wednesday and throughout the summer the characters will appear in adverts on ITV, online and at bus stops. The adverts will be gradually revealed online over the next two weeks."
Tuesday, July 1, 2008
To Gen Yers (20-Somethings): Is it all in Our Heads Now?
Today I did a guest lecture in class. Identity Development & Disability. It wasn't my favorite presentation, in fact after my Disability and the Family presentation of 4mos ago (the last one I did) which was fantastical, I'm a bit disappointed. But whatever. True to all the presentations I've ever given to adults, I got a thank you from someone after class. That's all that matters. I got someone to think. In fact, my professor, a developmental psychologist, told me that while I was talking she kept thinking of ideas for research. Please do them.
I'm off on a tangent. Sometimes I ask this when I talk, but not in the same way really as I did today. As a starting point, "What is the first thing you noticed about me?" Mind you this is the 5th week of class. Only one person answered.
"You contribute a lot in class."
That was it. From the looks on people's faces, he'd sumed it up. The professor said unless someone saw me get out of my chair (kept in the hall during class), if they just saw me sitting there in a desk, they wouldn't know?
WHAT?!?!?! What about my waddle. What about my mild speech issues? HUH?!?!?! Not what I was expecting at all. A friend called me and reamed me out after this post, not understanding why I wouldn't choose to get rid of my CP. She'd get rid of it in a heartbeat. It's the first thing people notice when they see you and she HATES it. Apparently not.
Come to the issue of people rushing to open doors for me and/or in my oppinion, opening them for themselves and then keeping them open longer then socially normal because here I come along. I bring this up A LOT. It's a hot button issue for me. Time and time again I get people (including this professor) who assert that they don't just do that for me. They're just nice people. And they sound completely genuine about it.
The whole experiance was actually very unsettling for me. I've only recently been doing peer presentations. In high school we purposly didn't do them. The coordinator of the program I was in thought it would make people too uncomfortable. Freshman year I think I did 4 or so to undergrad/grad special ed majors. But that was different. That was more of a business talk. So I've done a lot with kids and a fair amount with professionals, but really I've only done peers for the last 2 semesters. It's certainly been different. I'm confused though because I started this after a guy was doing a talk and people said they think of PWDs as people in wheelchairs, the elderly, or little children. Except when I talk, I'm not getting that.
Little kids still stare at me all the time, but teens/peers/"real" adults do not. Why? Why aren't I different? Why aren't I a freak anymore? Truth be told, I'd rather be a freak. I've grown up a freak and an outcast. It's what I know.
So maybe it's all in our heads. Maybe what we experiance now in our lives is a projection of residual feelings from growing up so different. Maybe I'm still so awkward now because I assume too much how people will react to me. Maybe I'm not giving people a fair shot. Or maybe I created a self fufiling prophicy. I don't know.
I'm not saying that ableism isn't alive and well, what I'm proposing is that since we are now mature "adults" we know better, and us AB gen Yers just no longer see the big deal. I hope I'm right. How cool would that be? I googled Gen Y. Some sites put us as a very narrow segment, but I found a somewhat consensus of people born between 1977 and 1989-97 (so let's say 93). We Gen Yers are 31-15.
To compare ableism to racism again, I hope most people would agree that Gen Yers are predominately not raceist. Of course some people will always be raceist, but we didn't grow up in a racially segregated world. Accepting peers of a different race is second nature. At least to me.
IDEA was passed in 1975 2 years before any Gen Yers were born. I hope we all started school mainstreamed/included, or at the very least, when appropriate, in a segregated classroom within a predominately regular education school. While I know services needed to be fought for us to be there, we were still there. We had just as much right as any AB kid to be there.
At 23, I'm smack dab in the middle of Gen Y. The ADA was passed when I was 5. I don't remember life without it. I can get into a movie theatre, or a mall, without it being an issue. Not all places are accessible, there are places down the street from me in older buildings that still have steps outside, but my point is, even though things still aren't perfect, I generally feel perfectly welcome to go about my merry way within society.
Maybe that's because my disability isn't severe. Maybe I'm in quite a good mood today and I'm idealizing society. Maybe if I came back to this severly depressed I'd think I wrote this on crack. I don't know...
We weren't hidden in someones back room or thrown away to institutions. Gen Yers didn't grow up in an abley segregated society. So maybe, like in the case of race, AB Gen Yers just don't know any different. Maybe it's second nature. I can hope.
Yes, as kids AB Gen Yers could be pretty cruel. Kids are still cruel to kids now. Kids are cruel to the disabled kid, the fat kid, the kid with bad acne, the poor kid without a lot of clothes, the socially awkward kid--AB or otherwise, for that matter, a popular kid who shows up at school with a bad haircut. Kids also stare at me, yes. But kids are equal opportunity bulliers. Anyone is fair game. Kids just have this thing with different. Maybe it's developmental? Am I saying that excuses such behavior? No. Kids need to be taught that it's just plain wrong to do such things.
But maybe people have done a good job at that. Like people like me. I used to talk to 3rd graders about my disability. Adults don't generally make fun of people who got a bad haircut (or so again I hope). So maybe when they reach a level of maturity where their brains develop enough to realize that staring and taunting is wrong and start accepting the guy with a bad haircut, they also accept all us gimps. I hope.
Or maybe I just hang around a university with intellectual people of a similar socioeconomic status. Maybe it's just that select segment of the population. Maybe things are different in other geographical regions or in areas with different level of education and socioeconomic status.
I hope not. Cause then as we begin to take over the county I'll start to really believe that I'm no longer an outcast.
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