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In the fall of 2007 I took community services for families for the first time. The goal of the class is to work in a group of 3 or 4 to provide a service for a community agency. We had to come up with an end product. An event perhaps, or maybe promotional materials. Whatever the organization needs at the time.
That first placement I went to a local hospital to plan a fall festival on the peds unit. In this particular hospital my supervisor gets a 1-2 page printout of every kid there that lists pertinent information such as what procedures they have lined up for the day. The info listed is pretty extensive and lists things that don't have anything to do with her role. What she usually does first thing in the morning is copy down 4 pieces of the most important information (to her) onto another sheet of paper, so she has an easier reference point for the day. She wanted us to do that. Except that I can't do that. I have ocularmotor (eye) problems that make things like that damn near impossible. The things we were looking for were in the same spot on every form, but I repeatedly couldn't find them.
I freaked. I've spent my whole life getting out of activities my eyes prohibit me from doing. But what am I going to do, go to a job interview and tell my boss, "I'm sorry but I just don't do paperwork?" I don't think that'd go over well. So I called the OT I went to when I was a little kid. Why not do everything on a computer? Why do they have to print it all out? Most (if not all) programs have a find function (under the edit menu). You type in what you're looking for, press find, and up it pops--highlighted. Then I could copy/paste it into the other sheet and print it out afterwards. I never got a chance to try this because I had to withdraw from the course, but it's a very simple, very ingenious, very free idea. Not only that, but a very green idea as well. I'd only be printing out that final sheet instead of all of them.
This semester I am doing a formal internship with the Towson University Outreach transition skills program for young adults with intellectual disabilities ages 18-21. The internship is both something very boring and very exciting for me. The first thing I have to do is update the resource binder they have that lists all of the adult service providers that these students will be linked up to after graduation (boring). Then I have to invite representatives to come and do some presentations, and, my own personal touch, invite some consumers I know to talk to the students about how to manage your own staff (not so boring). The last thing that I will be doing is purely for my own fun and enjoyment (the fact that there is educational benefit to the students is besides the point). I will be working with the local independent living center to organize some mass transit travel training. I get to plan field trips. *grin*
There is a very large problem with this placement through. Just as my physical disability necessitates accommodations in the workplace, so apparently does my psychological one. I need very close supervision in a work environment, and that's not something you'd pick up at first glance. My job will require me to go through this list one by one. That's not my idea of fun, and she doesn't even want me to do it on site. She has nowhere for me to do it. She doesn't have an available computer for me to use. That's bad news. She wants me to do something boring with no degree of supervision, and I won't go off on a tangent, but internet is my crack. I need away from computer activities. I would have been freaking last night, but I decided to forget about it and blog about ice. I've also been making a conscious decision to sleep more. Very maladaptive coping mechanisms...
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In the United States, the unemployment rate among individuals with disabilities ages 18-65 who are able to work has remained steady at 70%. Why? Why won't employers hire us? is it really so hard? Or so expensive like people think it is? I do know that not all workplace accommodations are free. The statistic is 51%. There is the other 49%. A friend of mine is legally blind. The school system she works for had to purchase screen magnification software for her computer, for example. Not free, but not hard either...
Friday, January 30, 2009
51% of Workplace Accomodations Cost NOTHING
Thursday, January 29, 2009
ICE
As I've stated in my 2 previous posts, Tuesday night we had an ice storm. Last night the melted ice and the heavy rain water did freeze as I'd expected. I'm glad I took something last night to knock me out because when I finally woke up I woke up to crashing ice. I have a horrible view out my window, thus my blinds are never open. I look right at a back stairwell. I thought someone was breaking it up, until I realized the sounds were sporadic, and loud crashy sounding. I reached over my head (my head lays right at the window) and pulled my blinds open. There were large chunks of slightly melting ice sliding off the very slanted roof and crashing into bits at the bottom of the stairwell. There were large chunks of ice falling from other spots on the roof as well. Good I thought. Broken up ice melts faster then large sheets of ice. But could they stop already? The incessant crashing was getting very annoying.
I got up and out finally only to find out that yellow caution tape was tied to the railings of the ramp. It was also tied to 2 trees on the sides of the sidewalk leading to the bottom of the ramp. I guess to save people from getting impaled by large chunks of falling ice. But what were they thinking? Everyone knows that a gimp in a chair lives there. The stairs weren't roped off though. There's an overhang that is not slanted that would keep the ice from hitting people entering/leaving that way. But what good does that do for a girl in a powerchair? 5 steps... I don't think so. I'll take my chances getting impaled by ice chunks. Maybe a hunky army doc will yank it out of my abdomen :) . Besides, by noon the ice had pretty much stopped falling. I figured 1) it was pretty safe, and 2) I had no choice. I couldn't be trapped. I had a 1pm meeting with my internship supervisor.
I tried to break the tape, but it didn't work. I did manage to stretch it enough that I could lift it over my head. The tape tied to the tree branches was high enough that I could duck and sail right under. My chair doesn't have handlebars so we screwed 2 hooks onto the back to hold a backpack. They weren't being occupied and on the way back in the building one of them managed to snag the tape on the ramp and break it. Great! Until I left to go to my appointment and came back to find the 2 ends tied together. *sigh* A gimp in a chair lives here. So I went in and got my chair so I could come to the library now to type this (wireless in my building wouldn't work) and this time did manage to break the tape apart in a different spot (the spot that had been stretched). But watch that I come back from here and find it tied together again. Or maybe not since it is after regular business hours. All I can do is shake my head...
Thankful Thursday
- My chair seems to be handling the ice well
- today is schwarma day in the cafateria
- My meeting with my new internship supervisor went better then expected
- I've got my ipods back (left them at school over break)
- My new coat is doing the job in this weather
- I'm back at school
- I have friends who care
- the library computers have not been as crowded as usual
- The tv in my building lobby has been free for Rachel Maddow
- Although the distance I can get in a cab through the local discount cab program has been significantly slashed, I can still get to my therapist on the $3 fare.
Wednesday, January 28, 2009
Are You Ever Embarased Asking for Help?
Last night there was an ice storm. I woke up to a campus covered in ice and when I left at 12 to go to class I found that a lot of it hadn't been dealt with yet. I'm lucky I take my chair to class and didn't have to walk. It warmed up and late this afternoon a steady rain started. All of that rain is going to freeze overnight. I doubt the school is going to deal with the new ice very well either.
That brings us to 3pm tomorrow when I have an appt with my shrink. I've never been over there in ice before. Do they deal with it well? I don't know. I called her cell phone earlier and left her a voicemail. "When you get to work can you call me and let me know how the ice is over there. You might have to come out and help me in." I'm lucky that she gets to work at 2 and will actually know what the current situation is outside. I hate ice. It scares me and if I slip and fall I can't get up.
What I don't understand is why making that call left me with a slight twinge of embarassment. This is not a situation in which I should feel embarassed. Especially not with her. She certainly knows enough about me. When I was younger I would get embarassed of course. But why now? Why do I care? As and adult who has been disabled since birth, why is it that something so small and insignificant (in the scheme of things) is getting to me? I wish I knew.
Monday, January 26, 2009
Back to School
It's that time again... Another semester has started. My posting will probably slow, just as it did in September and October. At least this was a pretty quiet 1st day of class.
I wish I could have found a better quality shot of this scene from Billy Madison, but It's all they seem to have up on you tube.
"Back to school! Back to school, to prove to Dad that I'm not a fool! I got my lunch packed up, my boots tied tight, I hope I don't get in a fight! Ohhhh, back to school! Back to school! Back to school! Well, here goes nothing!"
Sunday, January 25, 2009
People on the Move: Using All Transportation Options
Project ACTION Hosts Free Audio Conference
People on the Move: Using All Transportation Options
(ADA and beyond…)
2008-09 Distance Learning Series
Environmental Barrier Analysis and Options for Remedy
Wednesday, Feb. 4, 2009 (Part I) Webinar
2 - 3 p.m. Eastern time
Wednesday, Feb. 11, 2009 (Part II) Audio Conference
2 - 3 p.m. Eastern time
Register by Jan. 28.
This is a two-part conference and sign-up for both sessions will be required.
About this event
“Environmental Barrier Analysis and Options for Remedy" is part of a free train-the-trainer series to increase accessible transportation in your community. The Feb. 4 (Part I) and Feb. 11 (Part II) program will feature Penny Everline, ESPA training and technical assistance specialist, sharing basic information about conducting an environmental barrier analysis. Below is an outline of the presentation.
Part I: Webinar
2 - 3 p.m. EST Feb. 4
· Brief highlighting of features and potential barriers on:
1. Transit vehicles;
2. Transit facilities (i.e., stops and stations);
3. The pedestrian circulation network (path of travel);
· Review of a user-friendly environmental barrier analysis tool;
· Preparation for participants to conduct a brief environmental barrier analysis activity, which will be the basis for discussion in Part II (i.e., homework assignment).
Part II: Audio Conference
2 - 3 p.m. EST Feb. 11
· Facilitated discussion regarding participants’ findings from the environmental barrier analysis activity to be conducted after Part I;
· Discussion of the purpose and benefits of conducting a community-wide environmental analysis;
· Discussion of how and why transportation authorities complete this analysis;
· Facilitated discussion regarding the role participants can play in publicizing, implementing or reviewing this analysis.
The Feb. 4 event is a Webinar and will require Internet access and a telephone connection to fully participate. Instructions for connecting via the Internet and dialing in for the audio portion will be provided to those who register. We will also provide free training resources and materials. In return, we ask that you use the materials to train others in your community.
The Feb. 11 event will be an audio conference and will require a telephone connection only. Instructions for dialing in for the audio portion will be provided to those who register. We will also provide free training resources and materials. In return, we ask that you use the materials to train others in your community.
“Environmental Barrier Analysis and Options for Remedy” is among topics in ESPA’s series, "People on the Move: Using All Transportation Options (ADA and Beyond)."
How to participate
Registration is now open and will remain available until Jan. 28. After you register, related information, including dial-in and Internet access, will be provided in a confirmation email.
If you and other members of your organization wish to participate, we encourage you to register once and to use one computer and phone line, inviting others to join you in the room. This will allow for maximum participation.
In order to give Everline an opportunity to learn about the interests of participants, everyone is invited to send email to POTM@easterseals.com stating areas of interest and/or questions prior to the conference. She will review these comments and do her best to address these issues during the presentation. Please type “Environmental Barrier Analysis” in the subject line and submit the questions no later than Jan. 28.
If you have any questions regarding this or other People on the Move Distance Learning events, contact Kristi Ross at (800)659-6428 or through POTM@easterseals.com.
About the presenter
Penny Everline joined Easter Seals Project ACTION in 2006 as a training and technical assistance specialist. Prior to that, she worked for the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) where she authored materials for print publication and the Web site and provided technical assistance to Assistive Technology Act grantees. In addition, she worked for six years in university settings in student services where she oversaw staff training and taught several undergraduate courses. Everline currently serves on the Pedestrian and Bicycle Information Center Working Group and on the Washington Metropolitan Area Transit Authority’s Riders Advisory Council. She holds a master of social work degree from George Mason University.
Resource materials for this event
The use of two publications, (1) Personal Transit Experience and (2) Environmental Barrier Analysis and Options for Remedy, is required. Please indicate a desired format.
The following resources are optional:
· ESPA's Toolkit for the Assessment of Bus Stop Accessibility and Safety
· U.S. Access Board Web site and Guidelines for Accessible Public Rights-of-Way
· ESPA's The Rights and Responsibilities of Transit Customers with Disabilities
· ESPA's ADA Bookmark
· ESPA's Transit Operator's Pocket Guide
· Transcript from the 2007 distance learning event titled, "You Can’t Get There from Here: Increasing Access in Pedestrian Circulation to and from Public Transportation" in plain text or PDF formats
About the People on the Move series
For several years, People on the Move was provided as in-person training scheduled annually in five cities. In 2008, the format for POTM was changed to extend the learning opportunity to a much wider audience through incorporation into our distance learning formats of audio conferences and Webinars.
There are several remaining programs in the series. Each of the sessions provides a basic look at the topic being presented. While most of the sessions are stand-alone events from which participants can pick and choose, the more sessions you participate in, the more complete your People on the Move experience will be. Registration for each event is available three to four weeks prior to the event. For the full event schedule, visit the People on the Move Web site.
NOTE: If you have attended our People on the Move workshop in the past couple of years, this series of events will be a repeat of the information you received.Thursday, January 22, 2009
Thankful Thursday
- I can feel the change in my bones. Barack...
- My mom always calms down from being this mad
- I have plenty of people behind me (if only I would utilize them)
- I've gotten to enjoy new ethnic foods this week
- I've got new meds to try
- I have a great new winter coat found on clearance for $30
- Being more politically conscious makes me feel smarter/intellectual
- I have this blog and tons of art supplies
- Our frozen pipe didn't burst while we were away (caught it just in time)
- Although I need to get my orthotic fixed, it is a non essential part of it that needs replacing
Thursday, January 15, 2009
If You're a Tard and You Know it...
Before I get irate comments in response to the title of this post, I'm all for the R-Word Campaign. This post is a book review of sorts of The Short Bus: A Journey Beyond Normal (see sidebar) by Jonathan Mooney. It is one of the best books I have ever read. Mooney has an honors degree in English from Brown. He's also diagnosed with severe dyslexia and ADHD and can barely read. He was in special ed for years, rode the short bus to school, and thinks that "normal people suck." By the way, I happened to glance at the very end of the book while writing this post. He has also done some graduate work in disability studies. It's no wonder I LOVE this book.
Mooney wrote this other book I've flipped through, Learning Outside the Lines, after which he went on a book tour of sorts, doing presentations to special ed classes/teachers/parents. I've only read up to the end of chapter 2 of The Short Bus so far, but he had me hooked on page 8. That was the part where he talked about his book tour. On page 8 he talks about Clay, a middle school special ed student that he met on that tour. Clay sings a song:
If you ride on the short bus clap your hands
If you ride on the cheese bus, clap your hands
If you're a tard and you know it,
and you're not afraid to show it,
If you're a tard and you know it,
clap your hands
What follows has nothing to do with the book per se, but is rather an extrapolation of what I think this song means. I honestly don't think that this was in any way how that passage was intended to be interpreted.
The song is included in a discussion of the word normal, and the concept of the word normal. The fact that the world is classified as "normal" and "not normal." He talks about what that does to kids and how damaging it is. Then at the end of it all we get "If you're a tard and you know it, and you're not afraid to show it..." I went RIGHT ON!!! GO CLAY!!! What an assertion of disability pride! There is this concept that is frequently used in cognitive behavioral therapy. The "fake it til you make it" principle. I don't think that Clay had any degree of disability pride, because again I really don't think that's what the song is supposed to mean. He especially didn't have disability pride at his age. That's almost impossible. But personally, as twisted as this sounds, I think he will eventually and I think this song will help.
Thankful Thursday
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I've decided to participate in Thankful Thursday a minimum of 39 weeks in 2009. In case you're wondering where 39 came from (why not 40?) 39 is 75% of the weeks in the year. Why am I committing myself to Thankful Thursday? Because I also believe that thankfulness can lead to happiness.
So here's my list for the week. I'm thankful because:
- I'm going to Baltimore this weekend and the Disability Power & Pride Inaugural Ball on Sunday.
- I have 2 good friends that really care about me.
- I've gotten pretty good at networking and I can network even more Sunday night.
- Obama is going to fix this big mess that Bush caused. Even if it is going to take several years to dig us out. He's going to hit the ground running, with at least one major change happening on the 21st.
- I ordered a GREAT book on Amazon (see sidebar) and had the opportunity to read some of it yesterday.
- Finally after 4 years of dealing with DORS they did something really beneficial yesterday.
- Because my mom is getting married to someone my grandma called "the greatest man still living."
- I have an appt with a new Dr next week who might finally get my meds perfect. They're good, but not perfect yet, and my psychiatrist isn't living up to my standards.
- I joined ADAPT in June. It's given me a greater voice.
- US News & World Report listed child life as one of their 11 Best-Kept-Secret Careers. When I finally get my life together I might actually be able to find a job in my chosen field. I was always worried that the field would shrink if we hit a recession.
Tuesday, January 13, 2009
I Found a Guy and I Lost Him. Or, It isn't a Big Deal.
So a long time ago I put my best friend's boyfriend on the task of finding me a date. 23 and I've never been on a date before. PATHETIC.
Fast forward to Sept, one weekend night. I get a call from a bar. A friend was out with a friend and his friend's friend. Was I interested in a hook up or a relationship? I replied that I wanted A DATE. I would never hook up and how do I know if I want a relationship with someone I'd never met? He knew I had CP and he knew of my limited dating experience before I got that call from the bar. So that took some of it off of me, which was good. BUT he wasn't told that I'm bipolar, cause you can't see that. That made me nervous. I imagine that to be a more likely deal breaker. People think of people with BP as crazy, as drug addicts, as having sex with little boys (Remember Mary Kay Letourneau? That was her defense...). I'm diagnosed with BP II and I take my meds for the most part. Not only is BP II a more moderate form of BP, but I would say I'm in the mildly moderate area of that. I'm not crazy, just a bit of a mess.
I had his # for a month or so maybe. I don't think I ever would have called him. I was out for a friend's 25th birthday. One of our friends (who had gone to high school with him) happened to be glancing way across the bar. He was there. It was his friend's 25th birthday. He ditched his friend for 45mins to hang out with me. He called me the next day and picked me up and we went to the local diner. The next weekend was a horrible rainstorm so our plans got canceled. But the next weekend we went out and the weekend after that. We talked on the phone for an hr 2-3X/week and texted. Then it was my other friend's 27th birthday, thanksgiving the following week (still calling & texting), he went away, finals for me, that brings us to Christmas where I thought we had plans. We're Jewish. Christmas is National Chinese Food & Movies day for us. I texted him. He texted back 'who's this?' He took my # out of his phone. Didn't even have the decency to text me and tell me things weren't working out. I had an inkling. I hadn't heard from him in a week. But I thought he was a better guy then that.
For all these years (like 6) I wanted a 'nice Jewish boy.' And that's what I got. I knew I trusted my friend. But I learned something. I don't want a nice Jewish boy anymore. I want an ultra liberal Jewish boy. I've joined the local ADAPT. I have an ultimate goal of getting arrested by the time I'm 30. This guy was too conservative for that. I knew that from the start. It didn't mean that he couldn't be OK with me being ultra liberal. I gather that he wasn't and that's what it was. I'll take a crip and I'll take an AB. I'll take someone who's into save the whales. It doesn't have to be disability issues. Whatever. Just as long as they're passionate.
I'd like to share a word of wisdom (yes just one). Something that I learned over those 6 weeks. If something isn't a big deal, don't make it seem like it is. I never found out what he knew about what CP is. My friend didn't remember what he had told him, and like maybe he googled it. I don't know. But I could tell he didn't know a whole lot. So how do you bring it up? There were certain things he needed to know if he was sticking around for a bit. Not only how, but when? On the 3rd date, the 4th, the 5th, the 10th? I was kind of agonizing over that. I wanted to blog about it, but I decided that it isn't always good to blog about other people who might read it at a later date. He won't now...
2 people told me to take him out to eat and just come out with it. I could tell he had questions he was afraid to ask. I'm very open about discussing my disabilities with most people. Sit him down, tell him that, have a conversation. If something isn't a big deal, don't make it seem like it is. That would certainly make it seem like it is. I decided that I should just let things come out in regular conversation. That worked well. For example, one time I called him and he asked what I was doing. I said I was lying in bed. It was cold that day and that aggravates my spasticity. Lying on my stomach helps to stretch out my whole entire body. The downside of that? What came up in normal conversation was about ADAPT and how I want to get arrested. I hadn't planned on telling him so early, but it just came up. I know I scared the crap out of him. Back to the good side of it. I got rid of him early and didn't waste my time with someone who won't embrace my ultra liberalness. I still think I approached the subject of that disability in the right way.
What I didn't do right was tell him about my BP. I never did tell him. People who should know what they're talking about told me not to. I wish I had. People told me to let him get comfortable with the CP first and then ease him into the BP. I'm not sure if that was good advice or not. Someone told me that you don't have to tell someone everything about you on the first date. That was good advice. Someone simply said DON'T tell him. That only made me want to tell him even more. Except I never talked to him after that.
Why was that exceptionally bad advice? Because hiding it like that, that only makes it seem like a big deal. It makes it feel like a big deal to me. It makes it seem like I'm ashamed to be BP. AND I'M NOT. That person was basically telling me I should be. In many senses I'm proud of my BP. In others I'm very frustrated by it, but that's another post entirely.
I wish he knew I was BP before he met me. I wish he had been told in whatever way he was told I have CP. I don't see a difference between the 2 and it certainly would have made things easier for me. Back to 'people think of people with BP as crazy, as drug addicts, as having sex with little boys' and 'if something isn't a big deal, don't make it seem like it is.' I wanted to just tell him in normal conversation, just like I did with CP things. But I couldn't. How do you tell someone that hey, I have this thing, but I'm not crazy? Maybe just like that? Except where does the natural conversation starter come in? I say to my friends, 'I'm sorry if I'm snappy today or talking too much, or whatever. It's not anything to do with you. I'm manic today.' That's ok. They know me and I'm not the only BP in the group. But I don't think it's the greatest thing to say when someone who doesn't know picks up the phone.
Should I have told him on the first 'real' date (not at the bar)? The 2nd? The 3rd? Over the phone on purpose? Over the phone but wait for an 'in'? Not in a text. I know that much. I want to learn from this for next time. I think I'm going to the ADAPT youth summit in Chicago this June (crossing my fingers). Maybe I'll meet someone there. I can be out and proud there, not a problem. But maybe I won't...
Monday, January 12, 2009
Comments Work Now!!!
Sunday, January 11, 2009
Third Grader with Cerebral Palsy Gives Her All in 'The Nutcracker'
http://www.washingtonpost.com/wp-dyn/content/article/2008/12/08/AR2008120803618.html
My mom sent me this article when I was up at school like a month ago, and I have no idea why it never occurred to me to post it, but it did while I was eating dinner. I wish I had been home at the time so I could have gone to go see it. Be sure to watch the video as well, as long as you don't have a hearing impairment (it's not captioned).
Saturday, January 10, 2009
For Anyone with Comcast Digital Cable
I was flipping through on demand free movies and MURDERBALL was there!!!!! It's one of my top fav movies and is about quadraplegic wheelchair (obviously) rugby. Not to be missed if you have on demand.
Anyone Want to Make me a Photobanner?
Anyone know how? I have 5 photos I want to use and I'm thinking something like Born Just Right. Maybe? Maybe you have a better idea? I'm up for other ideas. I don't know how to do this stuff at all... thanks.
Friday, January 9, 2009
DBC 52: Things That Are Therapeutic
I'm very distressed over the turn out for this blog carnival. I got only 6 submissions. I wonder if it was too far from the last blog carnival and people forgot all about it? Or I wonder if people were too stressed to post with all that goes on this time of year? I've also noticed that a lot of old regulars have not submitted in a VERY long time. I wonder... The lack of submissions forced me to search through the blogsphere and find blogs I'd never come across before, so it was still a lot of fun putting this together. I hope you all take some time to visit the "carnival virgins" and welcome them. Maybe they'll submit to future carnivals?
And now for the carnival that will hopefully give you some ideas so that you don't end up like that guy...
Carnival Regulars
Danielle from The River of Jordan submitted a post about adjusting to a life with an absolutely adorable special needs son. Though therapy she learned that many things are therapeutic for her, such as getting involved in disability studies, going to the movies, and spending time with her son.
I found two posts from Kara about the therapeutic benefits of blogging. In A Blog a Day Keeps the Doctor Away Kara talks about a study that found that blogging helps some people decrease anxiety and depression and can promote creativity and critical thinking. In a later post Kara talks about a study that investigated whether blogging increased social support for people with SCIs.
Emma wrote a post that she told me was very much train of thought. She gave so much thought to this topic and came up with so many good ideas that she couldn't choose one. So she didn't. She wrote about counseling, blogging, reading, knitting, and swimming, in her entry, Things That are Therapeutic.
Carnival Virgins
Penny sent me a short post from Lorraine at Keep Bloggering On. She writes about the spinal cord injury sports club that she belongs to and how good it feels to be around people who get her.
Dierdre from Positive Thinking Everyday submitted her first post from December 2007 where she introduces herself and explains her "positives lists." She posts those frequently on her blog.
Marie just started A Day in the Life of a Disabled Mom this past October. I happened to find her 6th post, which I couldn't not include. It's titled very therapeutic.
TherapyDoc, from Everyone Needs Therapy, is a social worker from the Chicago area and is a big believer in the healing power of blogging (I seem to have found a lot about that). She reminds us though that there are pros, cons, and limits to the use of blogging as a therapeutic tool.
I found Jenni on Disaboom and then went to her other blog, The Site That Breathes, where I found a post about how she is going to destress over her winter break.
For the life of me I can't remember how I found Cheryl's blog (another Cheryl), Wishing and Discovering. She is also a very new blogger who started her blog this past September. I found 2 great posts from her. The first one is about how great it feels to laugh and the second one is her list of the 10 best moments of 2008, all of which revolved around something that's therapeutic for her.
Off Topic
Ettina, a carnival regular from Abnormaldiversity, submitted a post that was sort of on topic, which is about self-diagnosing ASD. I agree with the viewpoint of most autism advocates that it is impossible to seperate the person from the autism. That autism is as much a part of them as any other trait (blonde hair, athleticism, etc). On that line of thinking, Ettina makes a good point. Everyone who comes out as GLBTQ self-diagnosed themselves. You don't go to a doctor to have them tell you your gay. She poses the question that if they can do it, why can't we?
Penny submitted a random post she read and loved that was written by Laura Hershey. It's about Oral History and Disability Rights.
I received a submission from Rabbi Paul from California at the blog aptly named Or Am I? He writes about a book he heard about that was written by a 15 year old who has an autistic brother. I had a few minutes to look through his blog and I really wish I'd had more then a few. I also had a few minitues to browse through his synagogue's website. As I told Rabbi Paul in an email, I wish all shuls were as inclusive as his. Boy do I have some stories...
Lastly, Tom Styles didn't end up submitting a post to the carnival, but he's a real life friend of mine who I've just convinced to start a Disaboom blog and I want to give him a plug. He's a GREAT writer. Take a look at what he's got so far. This post makes me smile :)
Thursday, January 8, 2009
Carnival to be up Late
I am 25% done but I have multiple appts to go to tomorrow and won't be able to get back to it until after dinner here (US eastern time). Sorry for the wait.
Monday, January 5, 2009
Marissa Irwin: Professional Model with a Disability
Last night I was watching Mystery Diagnosis on Discovery Health and caught an interesting story about Marissa Irwin. When Marissa was 12 She started developing stomache aches, and then headaches and sore throats. She also started becoming frequently dizzy to the point where she started having blackouts. It was also discovered that she had a slight heart arythmia. Marissa had to start using a wheelchair about 3 or 4 years after her symptoms started. Through a google search of Marissa's symptoms her mom discovered something called a Chiari 1 Malformation. Chiari 1 is a condition where part of your brain squishes out of the top of your spine. She took Marissa to Long Island to a specialist to get 
diagnosed and have surgery. Surgery for her condition involves repostioning her skull and then fusing her upper verterbre to lock her spine in a position where everything is aligned correctly.
After the surgery Marissa commented to her mother that she was ugly; that she looked like Frankenstein. So, after all of Marissa's hair grew back in, her mother did what any good mother would do and had her take some professional photographs to boost her confidance. It was through those photos that Marissa was discovered. She is now a professional model in NYC. The picture on the right is of Marissa from Seventeen Magazine.
Marissa doesn't have a visable disability, but she sure has an obvious one. Her neck is fused. She ovbiously can't pose every which way a photographer would like her to, but nobody cares. She is still making a really good living as a model. I wonder if she really had to hide it at first? Do you think Marissa's modeling career will open up doors for models with mobility aids or missing limbs, for example, or do you think things will never change? I wonder...
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