Only 1 week to go until the January 8th 2009 edition of the disability blog carnival. I'm hosting, and the theme is things that are therapeutic for you. For example, what helps you deal with stress, anxiety, depression? How do you cope with your disability, your life? There is only 1 week left to submit a post. So far I only have 3 submissions and ideally I would like a minimum of 12. You can make your post as traditional or non-traditional as you like. If you've never submited to the carnival before, I highly reccomend it. It really drives traffic to your blog. To submit your post to the carnival you can go to the blog carnival form, post a comment here, or PM me. Unfortunately both methods involve CAPTCHAs, but at least Disaboom has an audio button. Also, remember that if you put 'disability blog carnival' in the title of your post Penny says she can usually find it. I can't wait to read what you write!
It's Beginning to Look A Lot Like Fun*Run Time
Wednesday, December 31, 2008
Sunday, December 28, 2008
About 6 weeks ago I posted an entry Mental Illness: Illness or Chronic Condition? I'd like to quote the end of that post:
Let people feel good about having a few screws loose in their head. There's nothing wrong with that. Teach them that there are positives to their condition. There have been some very famous people who were never the perfect picture of mental health.
Well, through alltop and then a click on someone's blog I ended up surfing the health section of nytimes.com for a bit and came across this great article, A New Face for ADHD, and a Debate. I'm very happy to report that some people get it.
Children with the disorder typically have trouble sitting still and paying attention. But they may also have boundless energy and a laserlike focus on favorite things — qualities that could be very helpful in, say, an Olympic athlete.
For that reason, some doctors are pushing for a new view that focuses on the potential strengths of the disorder. Dr. Edward M. Hallowell, a psychiatrist and author whose books include “Driven to Distraction: Recognizing and Coping With Attention Deficit Disorder From Childhood Through Adulthood” (Touchstone, 1995), says the current “deficit-based medical model” of the disorder results in low-self esteem.
“It’s not an unmitigated blessing, but neither is it an unmitigated curse, which is usually the way it’s presented,” said Dr. Hallowell, who has the disorder himself. “I have been treating this condition for 25 years and I know that if you manage it right, this apparent deficit can become an asset. I think of it as a trait and not a disability.”
The notion that a disability can be harnessed in a positive way is not a new concept...
Dr. Hallowell says low-self esteem and low expectations result from the way the A.D.H.D. diagnosis is presented to children, parents and teachers. He tells children with attention deficit that they have the brain of a race car, and he wants to work with them to build better brakes.
“We want to tell children, ‘You’ve got a difference, but not a disease,’ ” [emphasis added] he said. “Michael Phelps is one of any thousands of examples of mega-successful people, C.E.O.s and brain surgeons and famous writers, inventors and entrepreneurs, who have A.D.H.D.”
Other people apparently haven't hopped on the bandwagon quite yet.
“This reframing A.D.H.D. as a gift, personally I don’t think it’s helpful,” said Natalie Knochenhauer, founder of A.D.H.D. Aware, an advocacy group in Doylestown, Pa. “You can’t have a disability that needs to be accommodated in the classroom, and also have this special gift. There are a lot of people out there — not only do their kids not have gifts, but their kids are really struggling.” [emphasis added]
Ms. Knochenhauer, who has four children with the disorder, says they too were inspired by the astonishing performance of Mr. Phelps in Beijing. But she added, “I would argue that Michael Phelps is a great swimmer with A.D.H.D., but he’s not a great swimmer because he has A.D.H.D.”
Dr. Koplewicz, of N.Y.U., agreed. “There are lots of children in the world who have chronic illnesses or disorders like diabetes, allergies or dyslexia who accomplish great things in spite of the fact that they have these disorders,” he said. “I worry when we say A.D.H.D. is a gift, that this minimizes how real it is.”
I can go off more with my position on this debate, but I'd rather not. I'm more interested in what you think. Can you have a disability and a gift (ADHD and a bigillion olympic gold medals like Michael Phelps), as Dr. Koplewicz presents? Can your disability be your gift, as Dr. Hallowell presents? Or, as Ms. Knochenhauer presents, are both of those notions completely impossible? Maybe I'm preaching to the choir here at disaboom. I don't know...
Ok, I lied, I am going to comment ever so briefly. I feel bad for Ms Knochenhauer's kids...
Sunday, December 21, 2008
JEWS!!! Posting this b/c it's GREAT and most importantly, OPEN CAPTIONED!!! Happy Chanukkah everyone!
Tuesday, December 16, 2008
It's OK that I have a few screws loose in my head. If one falls out, I have a spare one stored in my ankle.
For those of you that don't know, 1) I'm bipolar & 2) I have CP and had ankle fusion surgery 6.5 years ago that involved putting a screw into my ankle. I'll just leave it there for safe keeping <chuckle> .
My mom was having a really hard time several years ago, and my grandma said to her that you need to be able to do 3 things in life. (I hope I have this right) You need to be able to look yourself in the mirror, you need to be able to hold your head up in the community, and you need to be able to laugh at yourself.
I'm pretty good at laughing at myself, but it's rare that I reach that level of comic genius, or that my timing is so great. I just rediscovered that joke the other day when I was thinking about things in my head. ROFLMAO. Unfortunately, people don't always know how to respond to my unique brand of humor. Sometimes they stare at me. You can see the wheels turning in their head. Are they supposed to laugh at me or is doing so going to make them look like an asshole? Is it OK or is it offensive? I want to know what you think.
In high school I had a sweatshirt. Plain gray on the front. On the back the words 'slow moving vehicle' with an orange triangle slow moving vehicle sign above them. For a time it was my favorite thing to wear. In 9th grade I was in the library and a student in my class saw the back of my shirt and told me that I shouldn't wear it. I was being mean to myself and that's not right. I'm sorry, but it's not mean, it's funny.
I recently rediscovered this video after being sent it by my high school best friend about 6 years ago or so.
She loves penguins by the way. I need to take time out to explain that I don't limp. I WADDLE. People like to say that I limp, but I don't, and it really grates on me that people say that. People with di/triplegic CP don't limp. THEY WADDLE. *off my soapbox* She sent it to me and said that the one on the left was me and the one on the right was her. HA HA HA!!! We were really straight foward, blunt, and borderline mean to each other (or maybe it was just me?). That context makes it even funnier. Or is it not funny at all? You tell me.
I'm a big fan of both John Callahan and Josh Blue. Unfortunately I can't find my favorite Callahan cartoons to post, but if you didn't have a disability, you would probably think there was something seriously wrong with me for laughing at them. By the way, in case you're not familiar with Callahan, he's a former alcholoholic, now a quad from driving drunk. I do love his crip humor.
I was able to find my favorite Josh Blue joke after I did a little digging on you tube. My all time favorite JB joke is in the video below, 2:53-4:15. Unfortunately not captioned, so I will transcribe.
There were some great things about being over in Athens though. One of the things I'll never forget is there was a party for all of the countries involved, like uh, Ireland, Scottland, uh Maryland... <pause for laughter> Little geography humor. Uh...
I was watching this at home 2.5 years ago and laughing so hard. Mom, you have to come over here. "I just don't think that is funny. I really don't think it's funny." What's wrong with my mom? She rasied a crip, shouldn't she get some of this?
I just can't wait, you know, I told her when I first found out that she was pregnant, uh, that she should have twins, uh, that way, uh, I could have a practice baby.
Again, ROFLMAO. There are some other good one's on JB's CD... But what about when the person making the jokes DOES NOT have a disability? Is it still funny? The other day I walked into my building and the big TV was on in the lobby. It was on Chelsea Lately, a sketch comedy show on E! that I'd never heard of. They did a facts of life reunion skit.
At 2:19 Gerri Jewll walks in. The real Geri Jewell is a comic/actor w/CP. Transcript starts at 2:34 and goes to 3:27.
Gerri/Heather: Hey Natalie, You auditioning much?
Natalie: Not really.
Gerri/Heather: How bout Extreme Makeover: Home Edition cause you're as big as a house.
Natalie: You can't talk to me like that!
Gerri/Heather: Yes I can. I'm a stand up comedian with cerebral palsy. I can say whatever Iwant. What's the problem Jo? Your lesbian girlfriend not here to defend you?
Jo: Back off Gerri. Back off!
Blair/Chelsea: OK, sto-- stop the cameras! You guys this is really stupid. We're doing this whole skit because Heather can impersonate someone with cerebral palsy. We're making fun of this girl who was on the show 3 times. People don't even know who she is.
Heather: I was on Facts of Life 12 times according to wikipedia Blair.
Chelsea: Stop it Heather! Relax your neck! Stop it! Sto--
Heather: Ok Blair
Chelsea: Stop! Stop!
Chelsea: Chelsea Lately is better then this. We are smarter then this and we--no. We should all be ashamed of ourselves. This isn't funny. Forget it. And I don't want to do this anymore, and I feel disrespectful enough.
What do you mean this isn't funny? It's hysterical. At least I think so. Do you think it's funny? Do you think it's offensive? I feel that if this show felt OK doing the skit then maybe society has started approaching an actual comfort level with crips in society. They're not making fun of Gerri. They're making fun of making fun at Gerri. They're making fun of political correctness. And I like it! I think it puts us more on an even playing field with the rest of able-bodied society. But maybe that's just me...
Monday, December 15, 2008
I'm hosting the Disability Blog Carnival AGAIN! See my August 14th posting for an example of what a carnival is. The theme for this edition is things that are therapeutic. What helps you deal with stress, anxiety, depression? How do you cope with your disability, your life? I want to know! For me it's blogging and art, but what about you? I want to be a child empowerment specialist after all. I'm going to need some ideas for my future career... So start writing! To submit a post, go to the blog carnival form, post a comment here, or PM me. Unfortunately, both methods involve CAPTCHAs, but at least Disaboom has an audio button. Also, if you put 'disability blog carnival' in the title of your post Penny says she can usually find it. I can't wait to read what you write!
Sometime in November I realized that I had written 93 posts and that I could time things perfectly to write my 100th post on my blogiversary. I have nothing really to say that I haven't already said. In July I wrote about how My Blog is Group Therapy, and I few weeks ago I wrote about how I'm Thankful for the disability blogsphere. So instead of reitterating myself, I'm going to write about something else that is therapeutic for me: Art.
I used to be scared of Art. The very mention of scissors sent me into a panic attack. I had a very bad art teacher in 5th grade that traumatized me. I have impaired fine/ocular motor skills and he was an ass about it. Then summer 07 I signed up for Intro to Art Therapy. What I was thinking I don't know. Of course you have to do art in art therapy class. DUH! But that hadn't occurred to me. Guess what? Now I LOVE ART! Why? Because art isn't about the end product. It's about the process and how it makes you feel (I can hear my professor in my head. She only said that about 1000X ). I also love that now art has no rules. I had a stupid OT in elementary that used to make me color things in the same direction (it looks better) and was a stickler that I colored things in completely without white space. Who gives a rats ass? I've been specifically shading things in loosely and coloring in random directions just because I can.
I had put myself under a blogging ban for a week to make sure my 100th post was today, and I wasn't doing so well. I needed to write. So I did what I did the last time I wasn't blogging so much-- ART. This time I stuck exclusively to mandalas. I don't think I'd do the greatest job at explaining what a mandala is, so look at arttherapyblog.com for a much better explanation.
My art therapy textbook talked about a study done with children awaiting medical procedures. It turns out that mandalas reduce both blood pressure and heart rate. They made kids less anxious. I didn't like mandalas the first time I tried one, but they seemed to grow on me. They made me feel better this last week. You'll notice the mandalas lining this post (bad camera phone pictures--sorry).
The first mandala I did on 12/10 (top left) is abstract like most mandalas are and made with the Crayola kids pick colors in my 64 crayon box. I find those to be very cheerful and the names are cute. It was inspired from this mandala that I did last spring (first one on the right) that had been sitting under my bed.
Next on the left I did another Mandala using the kid picks colors (2nd on left), still sticking with the abstract. From there I went to this blue and green mandala which I titled World of Holes (right above). It's important to note here that it is impossible to interpret the meaning and intent behind someone's art without talking to the artist. I did this in December, and it's round. Most people would think that it's supposed to be a Christmas ornament (you can tell better in person where it's not so washed out). It's not. I'm Jewish. Here it is also to note that in doing art therapy it is very important to just let your mind go where it goes. I wanted to stick with the abstract lines, and thus drew grey wavy lines. You know when you underline something wavy and then put little dots in between the waves? That's where the holes came in, albeit bigger then when you underline. I don't know why I colored it blue and green. I just did. But when I was finished I decided it looked like the world. This piece has some hidden very personal meaning that I don't wish to share. The ones with meaning always have a title...
Then I did this grey piece with flowers (left above). It's titled Pill Flowers. I got inspiration to do it by looking at the flowers on my comforter (they look nothing like this though). Pill Flowers is both medical art therapy and a utilization of assistive tech (low tech). I knew I wanted overlapping flowers of similar size and shape and without a circle in the middle. But I didn't know how to do it. I looked around my room. A pill bottle cap! of course. They're little enough and flat enough that I can see what my hand is doing when doing the petals on the far side of the flower. I find it weird though that the snap cap I grabed is from my lamictal bottle. I've been having issues with that lately. A subliminal message perhaps? I like this piece so much I just may frame it.
Since art therapy has no rules, why not extend out from your mandala, like the teapot I did with oil pastels awhile ago (on right), or draw a scene like the watermelon I did with chalk pastels for art therapy homework (left), or Rubber Duckie You're the One that I did last year with markers? I don't know why I felt the need to do Home Sweet Clean last December when I was really depressed and not leaving my room or talking to people. Or maybe I do... I did a piece a few days after most of these, which I havent taken a picture of. It's titled Sleep/Facial Disfigurement. If you know me in real life, you know why. For some more mandalas that delve into my psyche, see my post about art from last December. What is that white blob in the first picture in that post? No one's got it yet. Any more guesses?
I would also like to note that I don't just stick to mandalas all the time. Below I have a horse head, 4-leaf clover & horseshoe I did with oil pastels on November 3rd. Do you think it will bring me luck? I also have the front of a recipe card holder I did last summer. I made it out of an index card holder, tissue paper, clip art, and some mod podge.
How could I possibly end a post without including some DISABILITY PRIDE?!?! Below I have Free Our People done November 3rd, and Wheelchair Pop Art done for art therapy homework.
Monday, December 8, 2008
This week's edition of the disability blog carnival (to be published Thursday) will be hosted by Shiloh over at Sunny Dreamer. The theme is "favorite texts for hard times (songs, poems, scriptures, quotes, ...). This blog carnival theme was pretty easy for me. Quite possibly the easiest carnival to write on. I've only listened to my "hard times song" a thousand times in the last year, and probably hundreds of times last fall alone.
Every few months I get sick of all of the songs on my Ipod (all 1888 of them) and MUST purchase a new CD through Itunes. Last Sept (07) my purchase was the Grey's Anatomy season 3 CD. My former roommates got me completely addicted to the show, and anyone who watches knows how absolutely awesome the background music is. At the time I was looking for something upbeat and fast to match my mania and calm my workshop anxiety. The fact that most (if not all) of the songs are indie/not well known appealed to me as well. What I found though, more then 2 great fast upbeat songs and other interesting mid-tempo songs, was a great slow song. My "hard times song" is Keep Breathing by Ingrid Michaelson (see you tube video and lyrics below). I don't love the scenes from Grey's, I find them rather distracting, but she apparently hasn't produced a music video for the song.
The storm is coming but I don't mind
People are dying, I close my blinds
All that I know is I'm breathing now
I want to change the world
Instead I sleep
I want to believe in more than you and me
But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now
All that I know is I'm breathing
All I can do is keep breathing.
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now
I would like to write some deep dark long winded post about how this song connects to me and what it means to me, but I just can't do it. The fact of the matter is that the connection is just too obvious. Right after the workshop was over I went into a severe depression and couldn't get out of bed.
"I want to change the world/ Instead I sleep/ I want to believe in more than you and me/ But all that I know is I'm breathing/ All I can do is keep breathing"
What's more obvious then that? All I was doing at the time was sleeping, and anyone who knows me in real life can tell you how much I want to change the world. I want to work with 'crip kids' as a 'child empowerment specialist' (anyone who's going, 'what the heck is that?' I completely made it up, and will not reveal what the job will entail. You'll steal my fantastic idea...) I played the song over and over and sometimes it was the only thing that kept/stopped me from crying. "All I [could] do was keep breathing."
So that's my "hard times song." Even last week I was having a bad day and crawled into bed with my Ipod and played the song over and over. Sometimes all you can do is breathe, and that's ok. Eventually you'll change the world.
What's your hard times text?
Sunday, November 30, 2008
Here are the results of my poll. I know some of you were waiting on the edge of your seats. I got 30 responses over 6 days. 26 people were from the US, 2 people were from Canada, 1 person was from Austrailia, and 1 person's country is unknown. I need to go write the paper now. Did this first because I thought it would help me organize my thoughts.
Do you have a disability?
Are you for or against the legalization of prostitution (for everyone)?
Have you/would you ever pay for a prostitute?
Do you have a moral objection to prostitution?
Who am I to say?: 11
If you could get government subsidized prostitution (reduced cost) would you partake in those services?
If the government would cover all costs of prostitution would you partake in those services?
It has been proprosed that the government of the Netherlands pay for prostitution for men with disabilities. I feel this is sexist. Do you?
Do you think that men or women with disabilities feel more sexually inadequate?
Why do you think that some disabled people feel that resorting to prostitution is their only option? (22 people answered)
Lack of social connections and the fact that this is a topic that is not widely discussed.
For many potential sexual partners, a disability seems like an immediate turn-off in that they look at the disability and see defect first. I believe that disability makes people confront their own mortality and that makes them uncomfortable, so the chance for a person with a disability to express themselves sexually is harder...
They feel insufficiently appealing to get sexual partners voluntarily. it might be too much work.
because able boddied people look apon me with pitty or as a Buddy but rarly as a Person with sexual needs
Resorting to prostitution as an only option is felt by the disabled for many of the same reasons as the able-bodied resort to prostitution; availability, low-to-no rejection rate, discretion, release, and finally, and maybe most importantly, feeling a bit of passion, warmth, sensuality...feeling like a real man or woman...
What could be done to change these views? (21 people answered)
Legalized prostitution services for the disabled seems to be the only way to change the situation for the disabled since you can't force women to be with men they don't find sexually attractive.
If you want crips to have a higher self-esteem and to feel sexier, then get the question to Madison Ave add companies and to Hollywood. It's all about marketing and messaging. Happy, confident people are just sexier...
Self help group, counseling, meeting other disabled individuals who changed their lives.
EDUCATION , SEX IS NOT ONLY ABOUT ORGASMS SEX CAN BE EXPRESSED IN MANY DIFFERENT WAYS!
Disability education for the able. Exposure to disabled people. I love to answer questions from children, they're just curious. I will give rides in my power chair with their parent's permission.
If I knew I would do it!!
I think peoples views of disabled needs to change. Disabled people have the same sexual wants and needs as any able bodied person.
Old-fashioned, sexist, conservative views will never change, until this country catches up with, say, European views on sexuality, prostitution; and then maybe these views WILL change, for the better for all of us.Is there anything else I forgot to address? Comment here. (12 people answered)
The proposed dutch law is sexist, but it is also discriminatory. There are plenty of able bodied people who find it difficult to form romantic relationships - why are only the disabled singled out for financial assistance.
I would separate those disabled from birth and those disabled in an accident in your study. Those disabled later in life generally have developed normal social skills which greatly help them in relations with other people, while the disabled since birth usually have been ostracized during their youth and also protected by their parents and thus have not had a very good chance to develop the proper social skills necessary to win friends and influence people.
To me, prostitution is just another form of social work. (that one cracked me up!)
Tuesday, November 25, 2008
Well, it isn't thursday, but I'll be too busy to post on "thankful thursday." Some people wonder why my blog posts are so personal, so raw, why I'd open up my heart to perfect strangers. This blog is sort of cathartic for me. It allows me to sort out all of the feelings in my head without feeling judged. There is a reason that I host this blog on Disaboom as opposed to somewhere else. There's a niche audience here, who often think and feel as I do. I've learned through becoming an active participant within the disability blogsphere how comforting it can be to have finally found "my people." This blog post is particularly raw. I questioned posting it, but I've decided that if I could help even one person to realize that they are not alone in their struggles then it is worth opening my heart this wide.
For the rest of my life Thanksgiving will bring forth a strong emotion from deep inside of me. It's right up there with October 10th. I think I've been bipolar since I was 15. approximately. I went around for 7 years knowing that there was something "wrong" (for lack of a better word) with my head but I couldn't get anyone to recognize the pain I felt being only partially diagnosed as "twice exceptional" (I guess being smart and having CP also counts? Maybe I'm "thrice exceptional"?). The strong emotion that I associate with this year's Thanksgiving has little to do with just being thankful, but more to do with my life at this time last November. I started a downward spiral last Oct 10. I didn't know that the antidepressant I had been prescribed 3 years earlier had been making me manic during the times I was actually taking it. Who knew antidepressants could make a person manic? It only took one dose to trip me off. Thankfully my quick change in mood raised the concern of both my previous and current shrinks and I was referred to a new psychiatrist who would be able to follow me while I'm up at school.
I certainly have some serendipitous timing. It turns that October 10th, the anniversary of when I decided to finally consistency start taking my medication-- quite by accident-- is world mental health day and Thanksgiving weekend is when I hit rock bottom. I had gone from complete mania to a severe depression in less then 2 months. I can remember pleading with my mom and her boyfriend to leave me behind at school while they traveled up to New Jersey to spend Thanksgiving with my family. It was too painful to do anything but sleep. I can remember spending up to a week between shrink appointments only leaving my room to go to kitchen to grab some food once a day and then crawling back into bed. The only other thing that got me out of bed was going to get my laptop to peruse the disability blogsphere (it was then that I decided to start this blog). Something happened last Thanksgiving weekend that set me on a horrible schedule of falling asleep at 5am and waking up at 3 in the afternoon. It was the Monday after Thanksgiving that I found someone to finally believe me that after all those years the pain that I was feeling had nothing to do with my family dynamics and that I wasn't just looking for attention or an excuse for my behavior. I got a prescription for mood stabilizers that day. They've changed my life.
As this year's Thanksgiving has been approaching I've found myself thinking about all of the changes in my life this past year. I knew my life was better, but it took remembering the struggle of getting me out of bed last Thanksgiving day to fully realize how far I have come. So this Thanksgiving I am thankful.
I am thankful:
- For the disability blogsphere and all of the people I have been able to connect with over this past year
- For the ability to do simple things such as change my clothes everyday and take out the trash.
- That this semester I am passing all of my classes. I've had to make some changes that haven't been easy, but they've been worth it. I am especially thankful that I am not only passing my community services for families class this time around, but that I have an 88. It's a tough class for anyone and even tougher when you're "thrice exceptional".
- That through only 3 degrees of separation I was able to meet 2 very special people in my life (they know who they are) who have allowed me to almost completely shed my negitive self-concept and fully embrace my inner crip. They're my biggest cheerleaders
- That I've learned to focus on how far I've come and that now when I list my attributes I can list not just the negatives but also the positives
- That there are other people who also recognize how far I've come
- That as of Saturday, after 3 weeks of a non-functional powerchair, it is now in top working order again
I'm running out of time, I have to make an appointment, but I'm sure within the next few days I will be coming back to edit this list.
Last spring I heard about a book on the radio. Not Quite What I was Planning: Six-Word Memiors by Writers Famous and Obscure (Disaboom's very own Karen Putz made the book!). It was pretty easy to come up with my own six word memoir-- Always trying but never quite there. In the span of only 7 months I can now change my memoir. Always trying and I'm almost there. Please share what you are thankful for this year. I'd love to hear.
Sunday, November 23, 2008
*EDIT: SURVEY IS CLOSED* Thank you if you have already responded.
Here are the "rules" for a lack of a better word:
- Your responses will be kept strictly confidential. I do not ask for identifying information ANYWHERE and you are identified only by a number, such as 1819175.
- For the first 7 questions I will only be using precentages in my paper, and I may use one or two of the responses to other 3 questions. Or maybe not. I'll see.
- I will be posting the precentages on another post here on Disaboom for curiosity's sake, but again, NO IDENTIFYING INFORMATION WILL BE USED. See #1. I don't have any.
- The paper is due on December 1. The survey will not take answers after December 1. But please be kind and answer the survey in enough time to include the results in my paper. Sorry I posted so late!
- I really prefer that you answer the survey via Poll Daddy. It just makes things easier on me. BUT I'm not sure if Poll Daddy works with screen readers or not. If you are visually impaired, please PM me here on Disaboom. Here are the questions for you:
- Do you have a disability?
- Who am I to say
- Not Sure
School Helps Disabled Teens Find Love & Sex
Hospice Helped Man With Duchenne Muscular Dystrophy Lose His Virginity
Wednesday, November 19, 2008
It's been awhile since I posted a tiny bit of info for some locals.
I love reading Blake's stuff over at ihatestairs.org "In case of fire, use the elevator. Quickly." ROFLMAO Blake introduced me to the sport of powersoccer. It looks like you don't have to have any upper body strength and very little coordination to play. That's right up my alley. I did a little google searching. It was a little tricky, but I found out that there is a Baltimore area team! The Bennett Blazers. It's run out of a division of Kennedy Krieger. I enquired about the team, but the timing was bad. I'm hoping to join in Feb. I just got an email from the guy in charge that there is an event that some locals may want to check out.
"We have a Division I team with a roster of 6 players currently. We are hosting a tournament with 3 other teams on December 6 and 7th at our facility in Baltimore if you want to check us out."
Just a little FYI. Maybe some Disaboomers want to come check them out with me? Shoot me a PM if you're interested. And thanks Blake for getting me all fired up.
Monday, November 17, 2008
An uppity intellectual activist crip
To participate in next weeks disability blog carnival, go over to the blog carnival page.
Wednesday, November 12, 2008
Reflections from the AUCD Conference: Post 1
I was lucky to get the chance to do a poster presentation yesterday (along w/faculty) at the Association of University Centers on Disability's annual conference. I'VE GOT MY MOJO BACK NOW! I'm currently working on several blog posts in my head at the moment, all revolving around my reflections from attending the conference for a day. I learned A LOT in a few hours, met some interesting people, and even had the opportunity to inadvertently further educate the faculty I was with on disability etiquette and disability culture issues.
The conference had a screening of the documentary Including Samuel, with a Q&A with the director (Sam's dad) afterwards. The film was GREAT! I LOVED IT! It presented the issue of community inclusion from a disability rights standpoint, focusing on Samuel (obviously) who has CP, but also on a few others.
One thing in particular that stuck in my mind thoughwas a teen (early 20-something?) w/schizophrenia. They talked about the time she attempted suicide and then something was said about the issue of not if she would relapse, but rather when. Someone said something 'when she was sick' or 'when she gets sick again' or something, but the word SICK was there and it got burned in my head.
I have a "mental illness" I guess, but I'M NOT SICK! I don't have the flu. I'm the healthiest person I know! The wide use of the word 'sick' had been a pet-peeve of mine for years, starting from when my mom was diagnosed with cancer. She doesn't have the flu either. Cancer isn't anything at all like having the flu, although maybe I can concede that it has a closer correlation then schizophrenia.
When I google-imaged illness I got a picture of a boy wrapped in a blanket with a thermometer in his mouth and an ice-pack on his head (in an attempt to bring down his fever I guess). Does that give a clear picture of 'mental illness?'
At some point I adopted the term 'chronic condition' in relation to my mom. I've decided that CP is also a chronic condition, and bipolar is too I guess. Merriam-Webster says that chronic means "marked by long duration or frequent recurrence." Illness means "an unhealthy condition of body or mind." One definition of sick is "affected with disease or ill health." Another is "mentally or emotionally unsound or disordered." Health means "the condition of being sound in body, mind, or spirit."
There is a mental health crisis in the world. There is this gigantic stigma looming over everyone. People who could be helped tremendously by psychotherapy won't go. At best they may get their primary care physician to write a prescription that should be managed more closely by a psychiatrist. Efforts to reduce this stigma aren't going to work if we keep referring to a large group of conditions as mental illnesses. Is there something wrong with me because I'm bipolar? Because when you call it an illness and tell me I'm sick, that's what you imply. There is a lot to be said for the use and placement of positive and negative words. Look at the definitions above. Healthy equates to good. Good people are healthy. But someone who is plagued by a horrible illness is a bad person. Just look at how I framed that last sentence. Is anyone ever plagued by healthiness? Where in this are we helping people feel comfortable seeking out appropriate treatment? We're not. We're pushing them further and further away, simply by placing an emphasis on one word. Simply telling them they're ILL.
Also, by telling someone that they are sick it implies that they will get better. That isn't the case for a lot of people. Someone at the conference who is a big autism advocate mentioned how there are parents of autistic children that think that they will grow out of it. They think that autistic adults fighting for rights are faking it to try to get attention and take money away from their children. The same can be said for ADHD. Commercials for both pharmaceuticals and general awareness often use the term 'adult ADHD.' I have news for you: There isn't a difference. ADHD is the same in children and adults. Somehow people think it is better to lead people to believe that ADHD in adulthood is a completely different condition then to burst people's bubble that their child will grow out of it.
[picture discription: Van Gogh's Starry Night]
Chronic refers to something that plans on sticking around for a long time (if not forever). Schizophrenia, bipolar, ADHD, they don't just go away. Treatment is important to help someone to work with their diagnosis instead of against it, but treatment will not cure people who have these diagnoses. The word chronic has a much more neutral connotation then healthy, ill, and sick. To some a diagnosis of a chronic condition (mental or otherwise) might be the worst most dire thing that has ever happened in their life. To others it is a huge relief, a weight off their shoulders. Some may embrace their chronic condition. To them it may represent a badge of honor. It may become a huge source of pride. Others will always be ashamed and embarrassed of their condition. Labeling what they have as a chronic condition, as opposed to an illness, allows them to attach their own personal feelings to their diagnosis, instead of having feelings placed upon them. Let people feel good about having a few screws loose in their head. There's nothing wrong with that. Teach them that there are positives to their condition. There have been some very famous people who were never the perfect picture of mental health. Then maybe people won't be afraid to seek out treatment.
Monday, November 3, 2008
For Blake's edition of the Disability Blog Carnival:
1. I decided school is more important then blogging
2. Very few bloggable things have happened in the last few months
3. I don’t seem to have the concentration to blog anymore (if you haven’t noticed, my posts tend to be long)
4. I like sleep
5. I’m trying to spend less time online
6. My life seems to be revolving around people, as opposed to more abstract things like disability culture, and I don’t think those people want to be blogged about, as much as I’d like to blog about them.
Why I’m Sad I Don’t Blog Anymore
1. I like the connection with other uppity activist crips and the feeling of community
2. I think it would improve my mood w/o hurting as much as the gym did Thursday
3. I think it would help me to deal with said people mentioned above
4. I know people want to read my stuff and I want to write for them
5. I’d rather waste time blogging then waste time the way I have been lately
Can someone please tell me how to get my mojo back?
[picture description: cartoon of a computer monitor, keyboard, and mouse, all with faces. Monitor says to man: “We’ve been talking… and we all think it’s time you updated your blog]
Monday, October 27, 2008
[picture discription: 2 cartoon people sitting with their backs to us and with their arm around each other looking at a bright red heart as if looking at the sunset]
So last school year Hillel somehow found someone going to school to become a licensed clinical professional counselor to come once a week for an hr (sometimes we ran into an hr and a half) to do some semi-group therapy as part of the hours she needed to graduate. We called it Dating Mating & Relating. By semi-group therapy I mean that everyone that came were good friends of mine, so it had quite a different dynamic then "traditional" group therapy. I went last year partly due to peer pressure and partly because I really needed the extra day/week of therapy and this was free. I found that I really liked it. I liked the person who was leading it and I liked the conversations we got into. Although I was friends with everyone and we talked about things we already talked about, there was a different dimension to it; it was deeper and I enjoyed the structure of it. The same held true for a bunch of us who all decided we wanted it to continue.
It took WAY to long to get the thing rolling (apparently there were bureaucratic issues or something), but we finally had our first meeting today. Unfortunately many of the "key players" were missing. There was me and only 2 other of the originals, but a freshman showed up. I like him. I see him contributing a lot. In the course of 45mins the conversation went from the most meaningful event/time in your life, to what makes a parent, to something else, to dating. That was good because at the moment it seems as if the freshman and I are in the same place in regards to that subject-- contemplating the same issues.
Freshman brought up something and then looked at me, as I was the only "girl" in the group today. He wanted to know if girls place more importance on looks or personality? Well, first off, all girls are different in their preferences and priorities, so I said I can't speak for the entire female gender. I said I really can't answer because I'm not like other girls. In what way asked a friend of mine? Well, for lack of better words, I said "I'm 'damaged goods'." Now don't go posting comments telling me how good looking I am and how much I have to offer a guy. I know that. I just wasn't sure how to most clearly articulate the point I was trying to make.
My point was that a guy has to be willing to really take the time to get to know me. They need to go slow. I'm far from perfect, if you know what I mean. Being a gimp, I automatically weed out all jerks (a very good thing) just by the simple fact of me being me. Anyway, the whole thing really got me thinking. Who am I, as a person with layers and dimensions up the wazoo, to demand perfection of another human being? I feel as though I don't have that right. I'm quirky and guys have to be willing to except my quirkyness. I, in turn, can't just cast off all quirky guys as ineligible. The thought that went through my mind was, as a person with multiple disabilities, I have to be more open and inclusive whether I'd want to in reality or not. What I'm wondering now is if I'm being overly judgmental and completely unfair. Should we, as people with disabilities, have the same right as any AB to be completely shallow, or are we, by our very nature, automatically mandated to overlook the exterior (and minor mental quirkyness) of potential mates?
I'd like to think that I prefer quirky, dorky guys because of the open and accepting person that I am, and that I would still prefer the nice guy even if I never had a disability. But as Kara said, that's impossible to tell.
Sunday, October 12, 2008
It looks like Karen's participating, and I'm going to try my hardest to get something coherent up in time. Coherent is the magic word. Click the logo above to find out just what blog action day is all about. I hope some of you will add some intriguing posts to the mix.
Tuesday, October 7, 2008
Friday is my one year anniversary!!!!!! One year anniversary of what you ask? The one year anniversary of when I finally decided to start taking my meds. This is the biggest deal to me since the first time I walked all by myself (down to the kitchen to ask for something to drink). I don't remember that at all. I was only 4.This I think I will remember for the rest of my life. It's way more important, as I've come to the conclusion that why should anyone care if a person can walk or not? On the other hand, everyone should care if a person takes their meds. Just in case you're new to reading my blog, I was formally diagnosed as bipolar in December.
[image discription: crowd silloutte, confetti, & ballons: Congratulations... you did it!!]
I've had to master how to walk 3 times up until I was 14 when people finally decided to slow down on the slicing and dicing (surgeries). It took me 5 years to get this med thing down, and in the beginning when I finally decided to stick to it, it was just as hard as learning how to walk. Yet nobody's decided to acknowledge the effort. So I've decided to toot my own horn. I DESERVE IT!!!!! Somehow everyone thought the walking thing was a very big deal though. I just don't get that anymore...
[image discription: smiley face giving 2 thumbs up--CONGRATS!]
Usually I've only lasted 8 weeks, and once somehow for an entire semester, but a semester is nowhere close to a whole year! If I could jump, I think I'd be jumping for joy! (the dog will have to suffice) As this fall semester started I've known I was getting closer and closer to my anniversary (October 10th is now permanently burned in my head), but I just kind of decided to push it aside as something that was not all that big of a deal. It hasn't been all that hard for months. Besides, taking your meds is just something that adults do. And nobody else has ever cared, so why should I? Now that was just stupid... Of course I should care!
[image discription: picture of a jumping dog-- Congratulations! I'm so proud of you that I'm jumping for joy!]
I forget exactly when it was (March maybe?) but after nobody acknowledged my 5 month mark (remember that the longest I've ever stayed on my meds before this was 4 months) my best friend told me that if I stayed on my meds for a year she would throw me a party. You would think that if she promised to throw me a party she would write down the date somewhere wouldn't you? Apparently that was not the case. I've been trying to call her for days but she hasn't been calling me back. I finally got in touch with her earlier this afternoon and she had no idea. So apparently she doesn't care either. But you know what? I don't care that she doesn't care. I'll throw my own party! A few weeks ago she finally passed the praxis after taking it for the umpteenth time, and that is probably just as big of a deal to her. I go over to her apartment every Thursday to watch Grey's, so I'm going to go to Giant later to order us both a congratulations cake and pick up a congratulations card for her. She'll probably feel bad that she didn't do anything for me, but whatev.
[image description: crowd, confetti, and balloons-- CONGRATULATIONS!]
Pictures to follow...
Sunday, September 28, 2008
I sort of stopped working when school started (oops). After I somewhat recovered from the initial 3 weeks of extreme stress and anxiety, I decided I better get back to it. I'm not sure I've blogged about work before. In June I officially became one of the Maryland Disability Law Center's Sunshine Folk. Just so my supervisor doesn't have a cow, I don't work for MDLC, I work with MDLC. Some sort of very important legal distinction. They don't pay much, but I don't work much (and I'd still do it for free). It's a very part-time very flexible job. I'm working nursing home outreach. This month I did all sorts of very important work related things (meetings, venturing to the ADAPT action for a few hrs, a picnic run by the local CIL) but I hadn't been into any nursing homes. I have a "prisoner" I'm working to get out of a nursing home about 1.5mi from me who I hadn't checked in on. So after a meeting Tues I rolled over to her. I'm also supposed to be going to 2 new nursing homes a month. I went to the Medicare Compare site earlier in the month and found another nursing home 1mi from me in the other direction. But I never went there. So Friday right after class I rolled to the library to check my email and then I rolled over there. I need a good looking Sept report.
I know I've blogged about this before, but being able to roll to work gives me such a sense of freedom. I've often griped about how my lack of ability to drive a car limits where I can work and where I can live so much more then someone who can drive. A professor of mine lives up in PA and commutes an hr each way. I gripe that while I would never choose to do that, I still would like to have the option to, and I don't. I need to stop griping. This may just be the shock of the century, but I'm growing kind of fond of rolling. I may change my mind when the weather changes and I'm rolling 1.5mi up the street to my prisoner in 40 degrees, but I really like the way the wind blows through my hair as I travel at about 6mph. I also like the lack of advance planning that being able to roll to work gives me too. Friday I decided to roll over to that nursing home 15mins before I did. I didn't have to make sure I had enough $ for round trip cab fare or check and double check the bus schedule. I just went. And then rolled back here and went to dinner. I mean, I do have to make sure the chair has enough juice, but it'd been plugged in for 2.5hrs in the hallway outside of class. I'm not sure the thrill of spontaneity is ever going to get old, whether it's being able to roll 1mi to work when I'm at school or being able to walk 3 blocks to the grocery store when I'm at home.
What don't I like about being able to roll to work? The fact that I can roll to work. The fact that there are 4-6 nursing homes within a reasonable rolling distance of me. Why? Why do we have to warehouse so many people? Why don't people understand that it is more cost effective to serve people in their own homes? Why don't people know that the state has money to pay for home services, if accessed in the right way? Why are all of these people imprisoned when they don't have to be? I'll never understand.
Sunday, September 21, 2008
...seems to be all that I need to fall in love with myself.. For the last few years haircuts have put me in a rather good mood, but this time it seems to be particularly so. I'd been walking around for a month with horrible hair feeling grumpy. It was good when I got it, but 11 weeks is too long to go. I was holding out until after it finished being 90+ degrees every day to chop off my pony tail and bring my hair back to chin length. It's utterly AMAZING how much a great haircut can alter your mood.
I like to give a stylist and approximate length and then let them go. It's just hair. It'll grow back. Well the guy said he was going to give me a "sassy ass bob" and he did (until I washed it and fell asleep with it still wet that is). I got the biggest smile on my face as I watched large chunks of hair falling on my lap, and an even bigger smile when I got to see the final product.
I don't understand it, but no matter who cuts my hair and what kind of cut they decide to do, a new cut seems to make me feel like I can conquer the world and puts some spunk in my step. At 23 I still look like I belong in high school and for some reason I always get delusional and think that the cut has magically made me look my age. Somehow after a cut I actually feel like an adult instead of a kid masquerading as one. I feel like I can actually handle the responsibilities that adults have, and I feel like maybe now I'm attractive to men. I've been dressing better for the last few days, and if I could figure out which purse last had my lip gloss and eye shadow, I'd be putting those on as I rolled over to class. If only this confidence didn't fade as the hair grows out, I'd make leaps and bounds in my emotional development.I haven't been blogging or reading blogs for weeks. I'm going through a dry spell and a bit of a rough time. If only I'd known that all I needed to snap out of it was a good haircut, I would have gone and gotten one weeks ago! There were some other great things that happened this past week-- some time spent with hippie crips, a friend wanting to set me up on a date, my semiannual botox appointment, and a visit to my personal trainer (and the gorgeous man candy that work with her) right before my haircut -- but the haircut, the haircut just finished me off. It doesn't make the stressful anxiety producing things in my life go away, but I've gotten a bit of a break from those things occupying the front of my mind. I'm hot, I'm spunky, and I'm ready for that date (maybe?), because at least for the time being, I've fallen back in love with myself.
Saturday, September 13, 2008
SCHOOL!!!! Classes started on the 2nd. I HATE SCHOOL!!!! I've just got nothing blogable going on now. The first 2 weeks of the semester are the worst. Running (rolling?) around trying to get a handle on my new schedule, getting my profs on the same page w/me (or is that me on the same page w/them?), all of the fun things going on, and generally trying to keep my head on straight. It's maddening, and has been worse then usual. Very soon I think I will have some rather interesting things to blog about, as I hope to have some great adventures, or at the very least a thought provoking class or 2. I have a feeling I will be blogging soon as the topic for the Sept 25th disability blog carnival is "Falling." I'm an expert on that...
Thursday, August 28, 2008
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?"
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?
Sunday, August 24, 2008
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.
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 http://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?