cherylberyl

I Never Realized How Tired I Really Am

2008-08-28T07:34:00Z

Anyone who says their CP isn't causing fatigue issues is lying to themselves. Your body is only designed to be used one way, and when you use it differently 24/7 it takes its toll. I can first remember being tired in the 4th grade. It started in the beginning of the year. When most kids get to school in the morning they do anything they can to avoid going into class, so they hang around outside until the last bell rings and then make a mad dash through the door. Not me. I do anything I can to avoid having to stand, so everywhere I go I make a mad dash to the nearest chair. There weren't any benches outside so I was always the first kid into class in the morning. Every morning before any other kids were in there I would come in and hang up my bag and Miss B. would say "Good morning Cheryl, how are you?"

"Tired."

That went on for several months until she finally gave up. It was the same answer everyday. But at 10 you don't give much thought to these things.

In 5th grade my fatigue got worse very suddenly. After I was tested for mono, lyme disease and anything under the sun that could possibly make me tired, and all tests came up negative, my therapist decided it was an extreme stress reaction (I had the teacher from hell that year, another post for another day). It was late May by then I believe. He told my parents to pull me out of school for the rest of the year and almost instantly I wasn't as tired. Tiredness with an explanation.

I went to camp in the middle of the catoctin mountains for 6 summers. Not a very crip friendly environment, spending 4 weeks in the middle of the woods. Even with counsleors driving me around half the day in a golf cart, I never was able to get enough sleep to offset how much energy it still took to get around that place. Either lights out was too late or breakfast was too early. Take your pick. Every summer about half way through camp I would break down hysterically crying-- usually sprawled out on the gym floor as I didn't even have the energy to sit up. Even when I was 16. I would spend a day in the nurses' office, not able to sleep because of the noise in there, but at least laying down for the entire day and not having to move at all. That seemed to do the trick and get me through the rest of it. But that was camp in the woods, not something you can generalize to the rest of my life.

Then came middle school, 6th grade, where I was getting up at 6:30. That really took its toll on me. Like any good 90's tween I was addicted to TGIF, but by the time that ended at 10pm Fri night I was so tired from having to get up so early and make it through school that I would either fall asleep on the couch or my dad would decide to carry me up to bed. I was so tired it wasn't safe to let me walk up there alone. But I was getting up early...

In high school I had to get up at 5:45. I was at school at 7:05, 1st period started at 7:25. One day in 11th grade I wore a pedometer to school and I walked 3/4 of a mi just getting from class to class. No wonder I was so tired. But at least in 8th grade I had major surgery so I no longer passed out cold on the couch on Fri. It got me functional enough to stumble up to bed unassisted.

College was supposed to be easier on me. I knew it wasn't going to solve my fatigue issues entirely, but I would no longer be getting up before the light of day. Except that I got really depressed in college so that didn't matter. Again, exhaustion with an explanition. Last fall I got really manic. I didn't need to sleep as much, but I was more tired, not less. If you have chronic fatigue issues, being manic is just awful. I wish it were as great as other people w/BP say it is (the whole euophoric thing). Instead my mind was moving at warp speed, but the speed of my body stayed where it had been. CP and BP just don't go together. I couldn't keep up with it. I went around feeling like walking dead. Mania was keeping my body from obtaining the extra sleep it needed to accomodate the mania (that more then sucked). The exhaustion sent me crashing into a depression after my body finally gave out. When I finally got a diagnosis of BP II it again became exhaustion with an explaination.

Now all of that stuff is sorted out. I no longer get up at ungodly hours. I am not depressed or manic. I have had all the surgery in the world (and then some). But I'm still tired everyday. I have spastic triplegic CP and I've made it to 23 on my feet more often then not. This is the price I have to pay.

The real problem now is that I have to function in a society that prides itself on effiency. But I'm the epitomy of ineffiency. The last time I had a gait analysis done I found out it takes me 3.5X more energy to walk then someone else of my same body mass. And that test was done inside on even, flat, linolium floor. My campus is all hills with a bunch of brick. No wonder I'm tired at school, but I've been home for 3 weeks and I'm still tired. I'm that energy inneficient. I'm also inefficient in that because of visual processing issues I absolutely cannot multitask. So I can't accomodate the fact that my fine motor skills are slow and inefficient as well by saving myself some time. I just cannot keep up with the rest of the world. It has gotten to the point of causing signifigant anxiety issues for me in that people expect me to, and I've been in this fantasy world where I did too.

Why? I knew I was tired, but I was tired with an explanition. If I got rid of the problem I'd be less tired and then I could do it (whatever it was). Well, I sure hope I got rid of all the problems, but that didn't relieve my fatigue as much as it was supposed to (in my head). Now that those problems are gone I unfortunately have to function within my reality of still being tired. Reality sucks. Reality is making me incredibly anxious and bitter and angry. I get nervous when I'm not tired. It's a sure sign something is wrong. But could I be just a little less tired?

The thought of having to do all of what I have to do in a day is making me anxious and at times even nauseous. Mostly all I have to do is focus on trying to get out of bed in the morning and it will set me off. That is the hardest part of my day. It always has been. In order to have the time to do all that I have to do in a day I can't get to bed as early as I need to so that I have enough energy to do it all. I've gone over and over my color coded spreadsheet of this semester's schedule. I cut all I can cut. I could cut the gym? No. CP issues mandate that gym is non-negotiable. And it helps with the anxiety. I could cut out lunch breaks with friends and eat during class? Tried that before and it was an utter disaster. Without the break I get more tired and more anxious. So I cut sleep down to 8.5hrs.

Sounds reasonable, right? I need 10hrs to keep up with the rest of the spreadsheet. I don't know how AB students do it all. I don't work and I'm down to part-time to try and make things easier, and I keep freaking out about, of all things, just having the umph to get out of bed without pressing snooze for 2hrs. I could go on, and I could go on, about the impact my fatigue has on me and school, but this post is already crazy long.

I'm TIRED and I'm TIRED OF BEING TIRED and I'm at a loss as to what to do. I've said that we have to embrace our disabilities, that we have to learn how to work with them. Ok, that's great. I think I've got that part right. Except that I haven't gotten far enough to know how to work with/around this part of mine because I kept waiting for it to get better. Now that it's clearly not going to, what's my next step?

Want to Host the Disability Blog Carnival?

2008-08-24T05:52:00Z

I just submitted my last post to the Disability Blog Carnival and noticed that we still need a host for the Sept 25th carnival. If you're interested, go to http://blogcarnival.com/bc/cprof_546.html and email Penny. I had fun.

The Worst Words

2008-08-24T05:36:00Z

Often what you write is inspired by what you read out in the blogshpere, as is the case with this post. I've been trying to catch up on my blog reading and I'd have to be living under a rock not to have noticed that Tropic Thunder has touched a nerve. I went to see Tropic Thunder with a friend on Thursday. It's one of those instances where I decided I needed to make up my own mind. I'm not part of the Special Olympics crowd. Maybe "they're" being too sensitive. Maybe it really is just satire. I like jokes, I like funny things, I like to joke about my disability. I'm a big fan of Josh Blue. No one was being over sensitive. It was bad. It hurt.

Between the disability blog carnival I hosted, the Aug 28th carnival (on superlatives), and Tropic Thunder, my mind has been on words lately. I used to say that there were no bad words. I'm not sure I agree with censoring f--- or s--- (but just like PFL, I do it anyway). It's not the word in and of itself, it's how the word is used. Is mental retardation offensive? It's an actual medical classification. Is retard offensive? Absolutely. Yes. It's a horrible, nasty, awful, hurtful, stinging word. You see, it is all in how the word is used, the intent behind it. Mental retardation=ok. retard=not ok.

The word retard never bothered me in and of itself. As I said, I'm not part of the Special Olympics crowd, so the word was never directed at me. I've even been known to use the word here and there. At a self-advocacy training when I was 15 I was told not to use the word handicapped to describe myself (but not why that word was bad) but rather to refer to myself as challenged. Quite ironically think I remember telling someone that I thought that was retarded.

Retarded never bothered me, but challenged sure did. And spaz, and most certainly special, and why not throw in brave, courageous, and inspirational as well (don't know why cripple never bothered me). Two months ago I came across a 2003 Ouch! survey of the 10 most offensive words. Some of these words are on there, but not courageous and inspirational. Inspire is my #1 most offensive word I think.

I never did write a piece specifically for my carnival. Most carnival hosts don't. But I'm going to quote my carnival. "Am I a poor cripple or a proud crip? Am I artistic, athletic, brainy, funny, spacy, or stubborn?" Am I challenged, spastic, special, brave, courageous, or inspirational? Well, my top 5 adjectives for myself I think are advocate (passionate???), tired, loud, stubborn, and perplexing. My disabilities are also just as important to me. I just don't consider them adjectives. But I wouldn't be who I am if it wasn't for my disabilities. So in a nutshell this is what I am.

I guess I am challenged, sort of, in a way. I can't step up a curb or lift my leg up high enough to step into a bathtub. So it is a "challenge" to stay at a friend's apartment if all they have is a tub. But a challenge is something someone tries to overcome. I am not going to overcome my disabilities. That would be discrediting the importance they have in my life. A disability is not something to overcome. It is something to embrace. So I can't step up a curb. Have you ever heard of this thing called the ADA? There are curb cuts everywhere in this country.

Special means something is unusual, better then the norm. Am I unusual? I won't be the judge of that. I am not better then the norm. I'm a pain in the a$$. Special is used to demean. It is often paired with sarcasm and laughter. It does connote that we are unusual, but in the circus freak sort of way, not the rare diamond sort of way. Why does Special Olympics use special? Doesn't it just add fuel to the fire?

Both challenged and special are euphemisms. They're demeaning and patronizing words. A rose by any other name is still a rose. Don't sugar coat or try to cover up my disabilities to try to be PC or not hurt my feelings. You hurt me more by using these words. There's a sting to them. But neither word in and of themselves is hurtful. You can be challenged by a hard math problem or have a special book your grandmother used to read to you. It's all in how the words are used.

Someone who is brave and/or courageous perseveres over great odds. Usually ones that are difficult and frighting. Maybe they do so because they feel they are driven by a force greater then themselves. But PWDs are neither brave or courageous. We are just everyday people who do what we have to do in life just like every AB person out there. More so then the other words, brave and courageous make me mad.

To me someone who is as loud, stubborn, and frequently b!tchy (due to utter exhaustion) as I am is not an inspiration. She's obnoxious. Here are two of the definitions of inspiration from http://www.merriam-webster.com "a divine influence or action on a person believed to qualify him or her to receive and communicate sacred revelation. the action or power of moving the intellect or emotions." I certainly do not communicate sacred revelations and the main emotions I evoke in people are their levels of annoyance and frustration towards me. Don't you dare ever say that I'm an inspiration simply because I put some effort into doing something AB people do.

Inspiration is definitely one of those words that depends on context. After all, I was inspired to write this post. The word inspiration is very problematic to me. What happens when someone says that I'm an inspiration because I'm "living proof to patients that people with CP do really...honestly have a life?"Or if someone comes up to me after a speaking engagement and tells me how much I inspire people to think about things in a different way? The word still produces an instamatic pit in my stomach no matter which way it is used.

Spaz is the only word here I really like. Spaz used to sting really bad. Here are the first three definitions of spaz from www.urbandictionary.com : 1) Means a person acts insane or mentally retarded 2) Someone who is hyperactive or overly energetic 3) An irrationally nervous or jumpy person. No one ever called me a spaz to my face, but spaz was my retard. Why do I like the word spaz now? Well sometime maybe a year ago I decided that the word was not going to be eradicated from the english language and that if it was going to be used it might as well be used correctly. I have spastic triplegic cerebral palsy. I am a spaz in the true sense of the word. I've embraced my disability and so I've embraced that word.

As I said, the theme for the 44th disability carnival is superlatives. This is my list of the worst words. What do you think?

Webcast on Comparison of Housing Access Standards: Fair Housing, Universal Design & Visitability

2008-08-22T19:02:00Z

Please join the DBTAC - Southwest ADA Center at ILRU for a webcast on “Comparison of Housing Access Standards: Fair Housing, Universal Design & Visitability”.

Barbara Chandler, Fair Housing Manager at Metropolitan Boston Housing Partnership will present the webcast on “Comparison of Housing Access Standards: Fair Housing, Universal Design & Visitability” on Wednesday, August 27, 2008 at 2:00pm Central.

This session is designed for anyone with an interest in the different concepts of housing design for persons with disabilities. Housing design options for persons with disabilities and their families have broadened from the traditional mandated code accessibility standards over the past few years. While this has created more options, it has also created much confusion as to what these concepts offer in terms of developing housing that best serves this highly diverse population. The speaker will provide a comparison of the goals, principles, standards and general levels of accessibility of the Fair Housing Amendments Act of 1988, universal design and vistability. Ms. Chandler will also discuss the differences between mandated standards of accessibility and voluntary general principles.

To link to this webcast and download accompanying materials visit:

http://www.ilru.org/html/training/webcasts/calendar.html

For instructions on how to access a webcast visit:

http://www.ilru.org/html/training/webcasts/instructions.html

Please visit this site ahead of time to test and ensure your computer is configured and updated to participate in the webcast.

For technical assistance, please check out our FAQs (frequently asked questions) at: http://www.ilru.org/html/training/webcasts/FAQ.html

or contact a webcast team member at swdbtac@ilru.org or 713.520.0232 (v/tty).

This webcast is supported through the DBTAC - Southwest ADA Center, a project of ILRU. Southwest ADA Center (www.SouthwestADA.org) is one of ten Disability and Business Technical Assistance Centers (DBTACs) funded by the National Institute on Disability and Rehabilitation Research (NIDRR) to provide training, technical assistance and materials dissemination on the ADA and other disability-related laws. NIDRR is part of the U.S. Department of Education.

The opinions and views expressed are those of the presenters and no endorsement by the funding agency should be inferred.

This one sounds particulary interesting

2008-08-20T22:49:00Z

Please SAVE THE DATE for the upcoming teleconference and webcast, “Let’s Talk About Sexuality!” presented by the National Youth Information Center of the National Youth Leadership Network on Tuesday, September 16, 2008 at 8:00PM Eastern.

Join this teleconference and webcast to learn more about:

· Dating and Marriage

· Reproductive Issues

· Safe Sex and Safety

· GLBT QI (Gay, Lesbian, Bisexual, Queer, Intersex Issues)

Also, our presenters will be discussing:

· The history of people with disabilities and reproductive justices

· How to get only what you want when it comes to dating and sexuality

· How marriage affects SSI and other benefits

· Talking about your disability with a date

Help young people with disabilities talk about sexuality. Spread the word!

To sign up for this webcast visit www.nyln.org. A Teleconference link will be available soon. Please refer any questions to eleanor@ncil.org.

Unpack Your Adjectives: Disability blog Carnival 43

2008-08-15T03:33:00Z

A few months ago I was having a conversation with a close friend and he mentioned as sort of a criticism that if I were asked to list the top five words to describe myself, the top one would be bipolar. I responded by saying that my top adjective is advocate. What I choose to advocate for is disability rights, and so bipolar, as well as CP, happen to fit under that.

This conversation has stuck with me, mainly because looking back on my life I never thought that would have come out of my mouth. So I started thinking, and realized how powerful adjectives are. Adjectives tell us how we think and feel about ourselves, our disabilities, and society, as well as how society thinks and feels about us. Are we poor cripples or a proud crips? Are you artistic, athletic, brainy, funny, spacy, stubborn, or are you autistic? Or both? Is your disability more or less a part of you then your other traits, or equally important? Sometimes it depends on the situation. If you are trying out for a school play, it is most important that you are extroverted. If you are a die hard ADAPTer you probably find your disability so important that you become tough and immovable in your fight for our rights. If you are a paralympian it is equally important that you are both a crip and extremely dedicated.

HOW WE VIEW OURSELVES

Both Emma and Shiloh have written great acrostics that show a balance between their traits and their disability very well. To them it seems as if their disability is just as important as their other traits. They are creative, lovable, cripped, able, annoying, and loud and have cerebral palsy. Greg from Pitt Rehab described himself from A-Z. He is Accessible, bright, credible...

Woo from TRANS/VERSE writes a post about embodying your disability. She explains how your body and your disability are one in the same.

I think it's always healthy to be able to laugh at yourself and I think that Blake agrees. He says that disabled people are funny looking.

HOW WE FEEL

Emma, Jacqui, and activevoice are annoyed. Don't EVER touch Emma or Moo's chairs if you come across them. It's rude! And if you come across activevoice and her son, don't ever ask what's wrong with him. The answer is NOTHING. Unless being a loud teen is wrong that is.

In her first contribution to the carnival, Grace Young expresses her frustration at the inaccessibility of her hotel room and other places. I think Glenda would agree with her. She's frustrated because there is never an accessable washroom when she needs one.

DeafMom is excited because she is finally getting her long awaited jetski. Happy birthday Karen! Kara took time out of her busy schedule of planning a wedding and appying for internships to post a very funny conversation that she had with her mom. Tiff is also happy and excited because she finally got off the waiting list for an adapted yoga class after 2 years. Tim is amused at the $387,568 wheelchair that's been advertized here on Disaboom. It has jet perpulsion and goes from 0-300 in 60 secs.

scrappywheels and Martina write about the disability community. scrappywheels writes about how she has become addicted to Disaboom because she can be comfortable here among others with disabilities. Martina discusses the topic of educating kids with disabilities about disability so that they can be knoweldgeable of where they fit into the disability community and become capable of managing their needs/services. You have no idea how much I agree with you Martina.

Disabled Politico writes a post that makes me feel outraged. Andrea Kellly let her 14 year old daughter Daniel die on a maggot infested mattress because she was embarased of her daughters CP. If you're not familiar with Disabled Politico, be sure to check them out. They're my premier source for disability news.

HOW WE ARE VIEWED

Muse writes a post about coming across a woman who had been on TV. She wonders if she should have approached her, but decided not to, as we are all just regular people. In the post she also makes mention to the fact that the government of Israel, just like the US, seems to like to keep crips unemployed.

In possibly the most popular Disaboom post ever, Vicki asks "Why Are Disabled People So Mean?" Be sure to read through the comments. I think I'm responsible for getting people so fired up by discussing my feelings on independance. But it lead to some great discourse.

I couldn't possibly host a carnival about adjectives without including Holland and Eden. They are SO CUTE! My favorite post? She's Got Power! Eden looks so happy.

ON WORDS AND ABLEISM

Glenda agrees with me that the adjectives we use say a lot about how we think and feel.

The Blogs Feminist Philosophers, River of Jordan, Chewing the Fat, and Abnormaldiversity all have great posts on the power of words. Both Danielle from River of Jordan and Dave from Chewing the Fat write about how much adjectives like cripple, retard, and even seemingly harmless words such as little, can hurt a lot. Ettina from Abnormaldiversity writes about words that can hurt all minority groups and wonders if it is possible for discriminatory people to change. Feminest Philosophers give us a well needed warning-- we need to be aware of the potential for miscommunication when using adjectives, metaphors, or any words.

ecrowley reposts an article from Diversity Inc 7 Things Not to Say to a Person with a Disability that illustrates that there is both a right and wrong way to use words. For example, it may be ok to ask someone about their disability, but to reiterate from activevoice, never ask us what is wrong with us. Do you have anything else to add to the list?

In a three part series Sweetie's Mom shares her thoughts on people first language. To read my thoughts on people first language, click here.

ON SOCIETY

Liesl writes a very intellectual post as usual about poverty and the state of the world. She is the most intellectual crip I know.

Who's Planet is it Anyway? writes about John McCain's views on the Community Choice Act. He doesn't support it because he thinks that we cost too much. He isn't the first politician throughout historyto think that providing equal rights to minorities is too expensive. If only someone would tell him that all those politicians were wrong and he is too.

Lastly, Bad Cripple writes about how the government of Canada also thinks that people with disabilities are too expensive. A family wishing to immigrate to Nova Scotia was denied entry because of their daughter's rare disability. Apparently we excessive demands on Canada's economy.

And now, here's a treat because you all waited so patiently for me to post. I'm getting this in just under the wire at 11:30pm eastern. I'm home for a few weeks and we only have one computer for 3 people, so I had to do this in pieces throughout the day.

UNPACK YOUR ADJECTIVES by Schoolhouse Rock

Got home from camping last spring.
Saw people, places, and things.
We barely had arrived,
Friends asked us to describe
The people, places, and every last thing.
So we unpacked our adjectives.

I unpacked "frustrating" first.
Reached in and found the word "worst."
Then I picked "soggy" and
Next I picked "foggy" and
Then I was ready to tell them my tale,
'Cause I'd unpacked my adjectives.

Adjectives are words you use to really describe things.
Andy words to carry around.
Days are sunny, or they're rainy.
Boys are dumb or else they're brainy.
Adjectives can show you which way.

Adjectives are often used to help us compare things,
To say how thin, how fat, how short, how tall.
Girls who're tall get taller.
Boys who're small get smaller,
Till one is the tallest and the other's the smallest of all.
We hiked along without care.
Then we ran into a bear!
He was a hairy bear!
He was a scary bear!
We beat a hasty retreat from his lair,
And described him with adjectives!

Turtle: Wow! Boy, that was one big, ugly bear!

You can make even adjectives out of the other parts of speech like
verbs and nouns. All you have to do is tack on an ending like "-ic"
or "-ish" or "-ary." For example: This boy can grow up to be
a huge man, but still have a boyish face. Boy is
a noun, but the ending "-ish" makes it an adjective,
boyish, that describes the huge man's face. Get it?

Next time you go on a trip,
Remember this little tip:
The minute you get back,
They'll ask you this and that.
You can describe people, places, and things.
Simply unpack your adjectives.
You can do it with adjectives.
Tell 'em about it with adjectives.
you can shout it with adjectives.

Carnival Coming!!!

2008-08-14T07:38:00Z

I never realized how much work it takes to put a carnival together. It could be up late, but it'll be up. Should have started earlier...

Shriver on Tropic Thunder

2008-08-11T17:53:00Z

*What 'Tropic Thunder' Thinks Is Funny*

By Timothy Shriver
Monday, August 11, 2008; A15

I've been told to keep my sense of humor about the film "Tropic Thunder," which opens this week. Despite my requests, I have not been given the chance to see the movie. But I've seen previews, read about it and read excerpts of the script. By all accounts, it is an unchecked assault on the humanity of people with intellectual disabilities -- an affront to dignity, hope and respect.

Consider this exchange:

Ben Stiller's character: "There were times when I was doing Jack when I actually felt retarded. Like really retarded."

Robert Downey Jr.'s character: "Oh yeah. Damn."

Stiller: "In a weird way, I had to sort of just free myself up to believe that it was okay to be stupid or dumb."

Downey: "To be a moron."

Stiller: "Yeah."

At another point, about acting like a person with intellectual disabilities, they say:

Stiller: "It's what we do, right?"

Downey: "Everybody knows you never do a full retard."

Stiller: "What do you mean?"

Downey: "Check it out. Dustin Hoffman, 'Rain Man,' look retarded, act retarded, not retarded. Count toothpicks to your cards. Autistic, sure. Not retarded. You know Tom Hanks, 'Forrest Gump.' Slow, yes. Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain't retarded. You went full retard, man. Never go
full retard."

I worked with the Farrelly brothers on a film on this topic. I know about edgy comedy. I'm also told that movies are equal-opportunity offenders.

So here's an equal-opportunity response to the equal-opportunity offenders:

People with intellectual disabilities are routinely abused, neglected, insulted, institutionalized and even killed around the world. Their parents are told to give up, that their children are worthless. Schools turn them away. Doctors refuse to treat them. Employers won't hire them. None of this is funny.

For centuries, they have been the exception to the most basic spiritual principle: that we are each equal in spirit, capable of reflecting the goodness of the divine, carriers of love. But not people with intellectual disabilities. What's a word commonly applied to them? Hopeless.

Let's consider where we are in 2008. Our politics are about overcoming division, our social movements are about ending intolerance, our great philanthropists promote ending poverty and disease among the world's poor. Are people with intellectual disabilities included in the mainstream of these movements? For the most part, no.

Why? Because they're different. Their joy doesn't fit on magazine covers. Their spirituality doesn't come in self-help television. Their kind of wealth doesn't command political attention. (The best of the spirit never does.)

Sadly, they're such an easy target that many people don't realize whom they are making fun of when they use the word "retard." Most people just think it's funny. "Stupid, idiot, moron, retard." Ha, ha, ha. I know: I could be too sensitive. But I was taught that mean isn't funny. And I've been to institutions where people with intellectual disabilities are tied to beds or lie on concrete floors, forgotten. I've heard doctors say they won't treat them. I know Gallup found that more than 60 percent of Americans don't want a person with an intellectual disability at their child's school.

I've talked to people with intellectual disabilities who cry over being insulted on a bus. I've received too many e-mails from people who are devastated not by their child's disability but by the terror of being laughed at, excluded and economically devastated.

It wasn't funny when Hollywood humiliated African Americans for a generation. It's never funny when good and decent human beings are humiliated. In fact, it is dangerous and disgusting.

This film is all that and more. DreamWorks went so far as to create a mini-version of Simple Jack and posted it online. The studio has since pulled it down, realizing it had gone too far, even in an age of edgy, R-rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about language that is bullying and mean. Ask your friends, your educators, your religious leaders to help us to end the stubborn myth that people with intellectual disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and our pocketbooks. We don't live in times when labeling and humiliating others is funny. And we should send that message far and wide.

*The writer is chairman of Special Olympics and a columnist for washingtonpost.com's On Faith discussion site.*

Maryland Disability Law Center to Host Voter Forums

2008-08-11T17:48:00Z

MDLC has embarked upon a major initiative to expand the power of the disability community voting bloc. The purpose of the voter forums is to register more people with disabilities to vote, give the community an opportunity to hear from the two major parties their positions on issues of importance to people with disabilities, become visible to the campaigns, provide an opportunity for people to become familiar with the voting equipment, and get our community informed, energized and motivated to go to the polls. Another purpose is to survey the disability community regarding MDLC's advocacy priorities.

The voting forums for people with disabilities are shaping up nicely and have been scheduled for:

*       Salisbury, Sept. 18, 1-3 PM, Dove Pointe

*       Frederick, Sept. 22, 1:30 - 3:30 PM, Public Library

*       Greenbelt, Sept. 23, 4-6 PM, Community Center

*       Baltimore, Oct. 1, 1-3 PM, League for People with Disabilities

We think it is important to have board members and staff at each of the forums.

More details are forthcoming but now that we have the dates, times and locations we wanted to give all of you this heads up.

URGENT ADA Alert from DREDF

2008-08-11T17:43:00Z

This is a reminder, in case you put the first Alert aside, that your Comments on the proposed ADA regulation changes are urgently needed by August 18, to the US Department of Justice. Many people have asked us, what if we can't address every topic? Just click on the topic you're most interested in, or the top 2 or 3, and fashion a short comment on that subject, based on the summary at the top of the page. Or you can simply copy and paste from the DREDF website, if you wish. Note that the most important issues are starred (**) below. Please go beyond forwarding this to others, and file a comment yourself. And include in every comment, a request that DOJ extend the comment period.

Start at http://www.dredf.org/DOJ_NPRM/.

ALERT! ALERT! ALERT!

From the Disability Rights Education and Defense Fund (DREDF)

and other disability rights attorneys and advocates

Department of Justice Proposes Vast Changes in ADA Regulations

YOUR COMMENTS URGENTLY NEEDED!

Please forward this alert widely

The deadline for comments is August 18, 2008.

TO SEE DRAFT COMMENTS, visit http://www.dredf.org/DOJ_NPRM

The Department of Justice recently issued major proposed revisions to its regulations implementing Titles II and III of the Americans with Disabilities Act (ADA). The deadline for comments is August 18, 2008.

Some of DOJ's changes are excellent, and urgently needed. It is important that the disability community laud these, to support DOJ against industry attack. Good proposals include adoption of the new 2004 ADAAG, stronger hotel reservation and ticketing provisions, recognition of psychiatric service animals, additional companion seating in theaters and stadiums, and stronger provisions for effective communication for people with hearing, visual, and speech disabilities.

However, there are also many draconian changes that would radically reduce the rights of people with disabilities. For example, DOJ proposes:

· A significant weakening of the readily achievable barrier removal requirement for public accommodations;

· A significant reduction of elements required to be accessible in state and local government facilities;

· An exemption for all existing facilities from the new recreation and playground rules;

· and many others.

DOJ must receive a flood of comments from the disability community in favor of a strong, comprehensive ADA. Comments must defend the principle of individual, case-by-case assessment, which DOJ is largely abandoning in favor of many blanket reductions. We must remind DOJ that the ADA is already carefully crafted to take the needs of covered entities into account, and that reductions to our civil rights would be a devastating blow to our daily lives.

Extensive draft comments, by topic, are available on the DREDF website to help you write your own comments -- click here. The list of topics is also below. The website also has information about how to file your comments, as well as tips on commenting and a link to the proposed regulations.

Important: Your comments will have the most impact if you revise our drafts to add your own thoughts, and especially your own personal experiences or those of friends, family, colleagues or clients with disabilities.

If you are short on time, just click on one or two of the topics that interest you the most. Write a brief letter based on some points in the summary at the top of that topic's web page.

Ask DOJ for an extension of the comment period in your comments!

MAKE YOUR VOICE HEARD: SEND IN YOUR COMMENTS!

TOPICS IN THE DOJ PROPOSALS ARE:

· ** Safe Harbor **

§         ** One-percent (1%) safe harbor for barrier removal in existing facilities for qualified small businesses

§         ** "Reasonable number but at least one" in program access under Title II

§         Exemption for facilities that allegedly comply with the 1991 ADAAG

§         Path of travel

· **Definition of "existing facility"

· **Comments on the Regulatory Impact Analysis

· **Title II Complaint Process

· **Communications; auxiliary aids and services

· **Service animals

· **Hotel reservations policies

· **Seating and ticketing in assembly areas

· **Medical care facilities

· **Wheelchairs and other power-driven mobility devices

· **Prisons, jails and the Prison Litigation Reform Act

· Social service agencies, residential facilities, transient lodging, and dormitories

· Residential Dwelling Units for Sale

· **Recreation Facilities and Play Areas (General Comments)

§         Saunas and steam rooms

§         Swimming pools

§         Exercise equipment

§         Team player and seating areas

§         Areas of sport activity

§         Boating and fishing

§         Golf

§         Miniature Golf

§         Topics not addressed

· **Questions concerning specific 2004 ADAAG Standards (General Comments)

§         Side reach

§         Water closet clearances in single-user toilet rooms with in-swinging doors

§         Elevators

§         Stairs

§         Accessible routes to stages

§         Accessible attorney areas and witness stands

§         Assistive listening system

§         Accessible routes to golf tees and greens

· Work Areas

· Maintenance of accessible features

· ATMs

· Examinations and courses

· Triggering Date

The deadline for comments is August 18, 2008.

TO SEE DRAFT COMMENTS, visit http://www.dredf.org/DOJ_NPRM

COME ONE COME ALL!!!!

2008-08-05T16:37:00Z

On August 14, 2008 the Disability Blog Carnival will be coming right here to Disaboom. It is being hosted by me on this blog. What is a blog carnival you ask? Well a blog carnival is a collection of posts centered around a topic which is chosen by the host.

Glenda wants to know "Who would miss the Carnival? Participating is a great way to meet new people, read new blogs, discuss topics and, even, increase traffic to your own blog. Come and join the fun!"

Sometimes they are hosted by one blog and sometimes, as in the case of the DBC, hosts are changed each edition. The DBC comes out the 2nd and 4th Thurs of every month. To view past carnivals click here.

The theme for this edition is ADJECTIVES. Please send me a PM with the URL for your post or leave it as a comment below. Both new and old posts are accepted. I've submitted posts that were several months old before because they just happened to fit the theme perfectly.

Any questions? Don't hesitate to ask.

Rethinking People First Language

2008-07-29T14:29:00Z

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.

Wheelchair Accessible Taxis Coming to DC!

2008-07-16T20:26:00Z

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.