I Should Have Been Blogging About Child Life Month

Child Life Specialists discuss CaringBridge. Click on the CL Month tag below to see all the videos from this and last year.

Questions & Answers (Eventually)

This picture above [2 street signs on a pole, the one pointing to the left says questions and the one to the right says answers] from Ellen's post last month on Love that Max inspired this post. Eva and Jenni both have question and answer segments on their blogs, maybe I will too. Although I've never felt all that curious, and I assume that most of my readers have disabilities, maybe you don't. Or maybe you do and still have a question. When doing a self-advocacy training for teens/20 somethings with DD, a woman with a DD stopped me during my intro and said "I've heard all people with bipolar are violent." A valid assumption given media. So ask away in the comments and I promise to get back to you in a post sometime in the future. When I have writers block it'll give me something to write about.

Moms & Botox: What's the Deal? Or, Botox is Relatively PainLESS (and Botox Day is Like Christmas)

I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.

In her next post Tanis writes that the day of the appointment was a soul crushing day for her. In 2009 Ellen wrote about being scared for Max. I don't know why Max's doctor puts him under general anesthesia for botox, I've never heard of that. I have heard of using conscious sedation for little children, like what was done with Ellie.

Kathryn thinks that people who think botox is not painful are out of their mind [look at the picture below, it's a teeny, tiny needle]. Jenni and I must be out of our minds then. Kathryn, have you ever had botox? How do you know? She seems to think that the pain produced from a botox shot is 100x worse then a tetanus shot. No, Kathryn, it's not. Tetanus shots are worse. To me, botox shots hurt about the same or less then a flu shot.

I understand that these kids are 7 and 8, and that when I first started getting botox regularly I was 20. I did have botox a few times when I was somewhat younger and unconscious, during surgery, but doing it that way makes it hard to determine whether improvements are from botox or surgery. I also had botox once when I was 18, although hardly any, I think just in my thighs and opted for the numbing cream.

I fully support the use of numbing cream, conscious sedation, distraction like bubbles or I Spy books, or sheer bribery like ice cream, money, or a trip to the toy store for little kids. I might suggest calling in a child life specialist. Getting upwards of 8 shots is a lot for a kid to take. I would have been a wreak at 7 and 8. But for the last five years I haven't opted for anything for pain management. Botox is my pain management. It's a g-d send. I just don't have the patience for EMLA. Having to wait for paratransit to take me to/from my appointment tries my patience enough. Waiting for Emla to kick in might put me over the edge.

OK, OK, I'm being rather misleading. Botox is injected all over my body every 6 months. I get it in 8 muscles, and because they are rather large muscles my physiatrist spreads the shots out and injects more then 1 spot. Of course I feel it. Of course, just like getting blood drawn or a flu shot, my natural CP reaction is that my whole body tenses up even before the needle even hits my flesh. Try telling someone with spastic CP to relax. It ain't happening.

Fortunately, I was told by Dr Gormley, of Gillette, that in the case of botox, tensing the area actually makes it easier for the physiatrist to find / access the correct muscle. Score one for spasticity! Of course it hurts when the needle is in my flesh, but as soon as it is out there is no longer any pain. It doesn't linger. I don't walk out of the hospital in pain. There is some very minor discomfort, but as my current physiatrist suggests, going for a walk afterwards not only helps work the botox into your muscles and helps it to take effect sooner, it also makes that discomfort go away sooner. What do you do if you can't walk? I don't know. Ask your physiatrist.

I always wonder why my doctor always has this look of guilt or something on her face when she is giving me botox. I'm sure the look on my face isn't pretty. I do always utter multiple OWWWs during the appointment. But I always wonder why she doesn't focus on the tremendous amount of pain that she is saving me. Or why she doesn't focus on the giant smile that I'm sure is plastered on my face most of the times she walks into the room. She's there to give me BOTOX! I'm a botox junky. Dr. Alter is one of my favorite people. She's totally got me strung out on the stuff :-)

She should hear the way I talk to other people anticipatorily about botox, with that smile on my face. Or maybe I should tell her that in the weeks leading up to "botox day" I go to bed thinking about botox the way most Christian kids think about Santa Claus (I think I have told her that actually). I'm sure little kids getting botox don't think of it this way, but I know of at least one other person my age (coincidentally a patient of Dr. Gormley) who looks forward to it, although I'm not sure if she looks forward to it as much as I do.

So I wonder why these moms look at botox with such angst, while I look at it as somewhat joyous in a way. Yes, I am injecting diluted botulism all over my body, almost from head to toe (from shoulder to calf), and yes, I'm fully aware that botulism in it's pure form is a lethal form of food poisoning, having done a report on it 8 years ago for 11th grade chemistry class. But the pain I otherwise have, especially from panic attacks, is unbearable. Although I'd like another option, I've rationalized the food poisoning. Why can't mothers?

As a Reminder...

that today is the first day of One Month Before Heartbreak, I post The 12 Days of CRIPmas

In Solidarity

Announcing One Month Before Heartbreak

From Emma of A Writer in a Wheelchair:

One Month Before Heartbreak is taking place from 14th – 16th January 2011. This is a blog swarm (or blog carnival) style event somewhat similar to Blogging Against Disablism Day (BADD). A Blog swarm is where people come together to post on their own blogs about the same issue and then share the links on a master list.

Drastic cuts have been announced in the UK to help reduce the monetary deficit. The proposed cuts appear to disproportionately target the more vulnerable members of society, including disabled people. When the cuts were first announced the government freely admitted that they hadn’t carried out a full analysis of the likely impact on disabled people.

The cuts include:

• Removing Higher Rate Mobility Allowance from people in care homes, a move which is likely to make many people prisoners in their own homes (and possibly in their bed in some cases as HRM can also be used for specialist powered wheelchairs).

• Changes to the way Disability Living Allowance (DLA) works. One of the proposed changes is that all existing claimants should undergo a medical to ensure people aren’t receiving it when they aren’t entitled. A costly and potentially pointless exercise as medical evidence is needed before DLA can be awarded and some claimants go for medicals anyway. DLA also has one of the lowest fraud rates of all benefits in the UK – I’m not a benefits expert but I have an incurable, lifelong disability – and an indefinite DLA award, I’m probably one of thousands of DLA claimants in similar circumstances. Sending me for a medical would cost a lot of money and achieve nothing that the forms and medical notes my doctors have provided hasn’t already done. All in the name of trying to save the government some money.

• Another change to DLA that is being considered is changing it to something called PIP (Personal Independence Payment). With DLA if you have certain conditions your disability is recognised and you get it automatically. If you are considered terminal there is a fast track system. PIP as it’s been described appears to have neither of those safeties. One of the main things which would be looked at with that would be how well you can use aids and equipment. For example, it’s pretty obvious that a wheelchair user has some mobility problems, if they didn’t they wouldn’t use a chair, after all. But under PIP rules they could be ruled to have no problems with mobility if they can use their wheelchair independently.

• Council funded care has been cut. The Independent Living Fund is ending which could force more people into care homes.. Access to Work has had greater limits placed on what it can provide which will make it harder for disabled people to find work and potentially may mean some disabled people who are working have to stop. Free bus passes are being withdrawn making transport more difficult. We are treated by the government as second class citizens and hate crimes are increasing.

• There are other cuts planned. The 12 Days of Cripmas is a topical take on an old Christmas carol and lists many of them. Chilling but well worth a watch.

The Broken of Britain is a non party political group which was set up by Bendy Girl to help give disabled people a voice in fighting these cuts. Many disabled people and our allies have shared their story, e-mailed their MPs or done whatever they can to help out the cause since it was launched. One Month Before Heartbreak is one of the projects we are doing this year.

As I said above it’s a blog swarm which means people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.

The consultation that’s currently ongoing about DLA reform ends on 14th February 2011. Which is Valentines Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name One Month Before Heartbreak.

If you want to take part, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific. You can participate on one of the days or on all of them – it’s up to you.

Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want! Sharing links and supporting those blogging is also very helpful

I [Emma] plan to make space available on my own blog [A Writer in a Wheelchair] to anyone that doesn’t have somewhere to share and wants it.

You don’t need to be disabled or a carer or come from the UK to take part. For our cause to be successful we need support from the international disabled community and from the non disabled community worldwide.

The full details of One Month Before Heartbreak (as they stand now) are available here

One Month Before Heartbreak

A Broken of Britain

Blogswarm

14th – 16th January 2011

Another Round Up

ETA: An old post of mine, an old research paper to be exact, Tiny Tims & Supercrips, was quoted here the other day, although in an effort to change the link to this blog from my old one, it no longer works. I still think it's cool, and almost missed it, except that I was reading The Goldfish.

First, I was cleaning out some very old email and found this:

The email said that this was done with a typewriter and that the artist has CP.

Next, I don't remember emailing this poem to someone, or even having read it 2 years ago, but apparently I did. It was recited at the disability pride parade, and is good.

Third, sorry Joe, you non-blogger you, you're off my blog roll because I've added Georgina Dollface (swapped one LP for another... huh... didn't notice that at first) She commented on this blog once, and I must have clicked on her blog then, but somehow I only just now, after doing so again 10mos later, noticed how great she is. You should blog more Joe.

If you want to take part in an amazing love story (I feel like a voyeur reading this blog) check out To the Other Side of Dreaming. I took the last of my disaboom blogs off of my blog roll when I added this amazing blog yesterday.

Fourth, Attila recently wrote about her collaborative craft studio, which employes disabled adults and caregivers / relatives. They make Christmas ornaments, that are the most gorgeous I have ever seen, and I think stuff for Easter too. If I wasn't Jewish I'd have ordered a bunch already.

Fifth, here's another great post from Therese. I'm sorry if you don't like dark humor, but I do.

Lastly, here's 2 more great stories from Joe Shapiro and NPR:

Click here for transcript
A separate story that ran earlier that same day, but wouldn't embed is A New Nursing Home Population: The Young

PINT

Thanks DeafMom!

HORSES AND CRIPS!!!!!

It's the BEST combination!!!!!

I was looking at an article on the Baltimore Sun website and they have this little video player thing on the side, as do apparently all newspapers run by this media group, as I saw a similar looking video player on an Ohio blogger's blog. Anyhoo, I guess they have many of the same videos on every site??? This place isn't even in Maryland. But whatev! Things like this are always a double edged sword for me as they make me both happy and forlorn.

A Roundup

First, Some blogs

Big Noise was briefly on my blogroll, but Cilla was never posting. Apparently she got inspired by Mike. Keep a look out. She may be back on soon if she keeps this up.

Through Networked Blogs on Facebook (here is Uppity Crip's page) I found Sasha is a Monster. Looks interesting. She's Jewish, in her 20s and has BP II. Remind you a little of anyone?

I also somehow recently came across Love on Wheelz. Google Love on Wheels and you come up with other stuff. The title of the latest post is offensive, but the writing is good.

I also recently rediscovered Deeply Problematic, good if you ever want to read blog posts that make you think. If you like thinking about the intersection of feminsm and disability that is.

Next, A Blog Post

Of course it's by Therese:

Alas, I came to the end of the day with some successes, and I realized that it's definitely not the noteworthy achievements that should be celebrated if you are, like me, impaired by bad brain chemistry. It's the days where you choose over and over again to get well, even though the other side is beckoning you to sleep in, eat pizza and ice cream, skip the exercise, and blow off work.

Then, Some Articles

A few weeks ago Emma posted that she had an article (a really good one) published in Disability Now. Read People Say the Strangest Things. I also found other great articles on DN:

As someone who uses a wheelchair and is interested in human services, I was really interested in Facing out the Elephant. Other good Mental Health related articles are Questions of Balance: Work and Mental Health and Trisha Talking the Talk, both of which have made PINT apperiances on this blog.

I can't finish with DN without mentioning their article about the current goings on of DAN, ADAPT's counterpart in England. Read Direct Action! Life on the Streets. I find DN so much better and to have so much more of a wealth of stories then New Mobility, the closest US counterpart I can think of. Oh, yes, DN has work by Americans too. There's Coming to Terms by NYLN's Betsy Valnes.

Lastly, an article in Monday's Baltimore Sun State Health Chief Pledges to Safeguard Public Mental Health Dollars

Top 25: My 500th post

It's my 500th post. We're 6 weeks shy of my 3rd blogiversary, something I probably won't commemorate, because I'm doing it now. I noticed 2 weeks ago that blogger now has a feature to display your top posts (up to 10) on your sidebar. I almost did, but then I realized that those are not my top 10 posts, although I think 2 are listed below. They're the top 10 most likely to be clicked on through a google search and then clicked off. Not ones people stick around to read. So, I've decided in honor of my 750th post (I'm planning ahead) I'm going to list my top 75 posts. They're all very personal to me and emotionally charged.

This first group will be my top 25 posts from December 2007 - September 2009. My next group, posted in April on the date of my 600th post, will be my top 25 posts from October 2009 - October 2010. My last group of 25 posts will of course be posted as my 750th post, In December 2011, and will contain my top 25 posts from November 2010 - December 2011.


So now here is the list, from oldest to newest...

What Does Disability Mean to Me? (my first real post) December 2007

I was getting ready to get in the shower when a seemingly random train of thought interrupted the mindless spacing out I engage in several times a day. I think I like myself better (at least somewhat) ...

What Does Bowling Have in Common with Art? December 2007

I have CP. In addition to the fact that I can't walk fast and that people can hear me coming from a mile away because I'm so heavy on my feet, or the fact that I seem to be incapable of eating like a ...

Label Jars? December 2007

I'm home alone with nothing to do (other then trying to locate the spare pair of sneekers I keep here), so I thought I would write an early blog post. The above picture appeared both on the slide for ...

Medications January 2008

I have written previously about my recent sleep problems. They haven't gotten any better and I've decided that I just do not want to be doing what I've been doing--sleeping pills. I agreed to try sleeping ...

Why Aren't There Child Life Specialists for Adults? January 2008

If you are reading this blog and are under 30 (or are over 30 and got lucky) or are the parent of a child with a disability that requires hospitalizations you have hopefully met a child life specialist ...

I'm Tired February 2008 (I'm so glad I don't feel like that anymore, but at the time I thought it was the most powerful thing I'd ever written)

I’m tired of being tired
I’m tired of having to fight all the time
I’m tired of having to struggle
I’m tired of not being in control
I’m tired of trying to be in control
I’m tired of being patronized
I’m ...

Tiny Tims & Supercrips March 2008

"It's always been my belief that media images of disability cause the disability community some of its most serious and persistent problems..." ~Prof Beth Haller [of media dis&dat]

Images of disabled people being depicted ...

Focus on Your Needs: BADD 2008 April/May 2008

If this is the first time that you have had a visit to my blog, I'd like to extend a big welcome. I hope you'll look around some more. For this year's Blogging Against Disablism Day (my very first), I ...

My Blog is Group Therapy July 2008

I got to this article randomly last night through a combination of allpost & the Disability Blog Carnival – which I am hosting right here in just over a month. Topic chosen, but under lock and key ...

SEX: The Elephant in the Room July 2008

Over the last 8 months that I have been blogging here there has been a fair amount of discussion on sex, as there should be. Everyone loves good sex, don't they? But no one ever wants to talk about sex ...

The Worst Words August 2008

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 ...

A Good Haircut... September 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 ...

Congratulations to ME!!! October 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 ...

Mental Illness: Illness or Chronic Condition? November 2008

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 ...

I'm Thankful November 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 ...

Art: Something Else Therapeutic/My Blogiversary & 100th Post December 2008

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 ...

I Found a Guy and I Lost him. Or, It Isn't a Big Deal January 2009

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 ...

My Testimony In Favor of HB281 February 2009 (This "law" passed on July 26, 2009 as an executive order by the Governor)

I mentioned in a previous post that I found out that a bill was being introduced into the Maryland Legislature in favor of Disability Rights/History education in schools. I wish I could have done a bit ..

What About ME!?!?! March 2009

I feel rather odd not having blogged for a whole entire week. I think I ODed on the whole blogging thing in Jan/Feb and I need a break, even though I wrote down a long list of things I want to blog ...

My Childhood was on TV Last Night March 2009

And I don't know how I feel about that. I have to sort my feelings out, and I don't know how. My shrink and I don't really do that.

It all started with Table for 12. A half hr Christmas episode. Eh. I'm ...

My Whole Life is a 'Happy Accident' April 2009

No, not one of those kind of accidents (I did say happy, didn't I?). [picture to the left is a car crash] And it wasn't an accident that I was born or that I have CP. No hospital negligence there. So ...

Ableism Where I'd Least Expect it: BADD 2009 May 2009

I was expecting to write another r-word post. There are some issues with the use of language that I am trying to understand. Like why it is OK to use crip/ple in certain circumstances but it is NEVER ...

AYS Day One Continued: Anger, Emotions & Anxiety June 2009

Some people might have noticed that I tend to pick one word, sentence, or phrase out of a whole long thing and burn it in my brain. I would look up a post and link to it, but my brain is tired and that's ...

The Book Jacket to my Memoir (Written in 2003) July 2009

For some odd reason I felt compelled to visit my geocities site that I started in the 7th grade and hasn't been touched in years. Good thing I did because it turns out that Yahoo is shutting geocities ...

Therapy (of the Mind Kind) September 2009

Yesterday I left a comment on this post at Everyone Needs Therapy. The post itself didn't lend to me commenting at all. I felt compelled to comment about people's comments. Start reading people's comments ...

Whatever Happened to...

Christine of The Power of Housewife Word of Mouth? I have taken her off my blog roll to add a blog, Cracks in the Pavement, by my friends, fellow ADAPTers, who wanted to blog about the lives of a disabled engaged couple. Go check them out! They're CUTE! Christine hasn't blogged since January.

Whatever happened to Cheryl of Wishing and Discovering? She stopped publicly following me quite some time ago, but was still blogging. I clicked on her blog yesterday to say "Hi. How ya doin? You haven't blogged in awhile..." (2 months) and her blog is completely gone, as you can see. I never read her last post, was it a good bye post? I have taken her off my blog roll and added the brand spankin new blog, Smart Ass Cripple, by the ever more famous ADAPTer Mike Ervin. You can find both of these new blogs on my blogroll under the new section of "ADAPTers who Blog." (Joe if you don't start blogging again soon, I'm taking you down)

Lastly, whatever happened to the character Dr Gabriel Fife on Private Practice? As much as I like crip characters on TV who actually are honest to god cripples, he didn't really fit in with the cast. But was there a good bye episode for him that I've completely forgotten about, or did he just simply vanish?

It's Labor Day Here in the US...

a day set aside to commemorate the American worker. It of course is just assumed that we are commemorating human workers, but it's not only humans who put in long hrs working. I thought I'd put up something short and sweet commemorating service dogs. If you haven't noticed, I have 2 new blogs on my blog roll which pertain to service dogs, Doodle at Your Service, which chronicles the life of Bailey, a SD in training, and Dog in a Dorm: Life with Holden at Mount Holyoke College.

Dogs don't have to be putting in laborious hours to be considered working. Sometimes loving can be just as beneficial as opening a door. That's where therapy dogs come in. I ♡ therapy dogs! The image above left was found last week by simply google imaging the word therapy while trying to find an image for Friday's post. This lead to a brief article on therapy dogs in hospitals, something I am very fond of. Here is a new video (if you missed it, the first one I posted is here) that highlights the impact that dogs can have in hospitals. enjoy!

Guest Post: Just Wondering by Deborah

My second and last guest post is by Deborah who writes at Pipecleaner Dreams and cross posted this on her blog today. Deborah has 4 disabled teenage/ young adult children, and has an interesting view as a parent that I could never share--I'm not a parent. I thank you for writing Deborah as you fufilled my goal of bringing different viewpoints to this blog over my vacation. Right is a picture of Deborah and her family from this past 4th of July.

We parents of children with disabilities spend a great deal of time advocating for our children. And, that advocacy often involves some sort of inclusion for our children with their non-disabled peers. We will say that we long for the vision of all children, regardless of ability level, playing together, learning together, just generally being one big happy group. But what about within the world of disabilities – do we advocate for that same level of inclusion? I’m not so sure…

I’ve noticed over the 13 or so years that I have had children receiving special education services in my school district that even within the disability world we tend to segregate.

Children with milder disabilities, even some with invisible disabilities, do not socialize or learn with children that have severe disabilities. Parents of children with Down Syndrome, for example, usually win the battle to have their children educated in the general education classroom. The children move freely among their non-disabled peers. But my children with significant or severe disabilities are kept in separate classrooms, often in separate areas of the school, using separate lunch tables, and with limited or no access to their non-disabled peers. That seems to be ok with those parents of the Down Syndrome children. But it usually is not ok with the parents of the children with severe disabilities.

And then there are those times and events that include children with emotional or behavioral issues. Parents of children with disabilities that don’t have those issues can often be seen drawing their children closer, away from the ‘wilder’ children. Or, parents of children with Deafness will often only facilitate socialization only with other Deaf children, relying on the whole Deaf Community argument for their rationale.

More and more, I hear about ‘Autism’ classrooms. Are we sure that isolating children with Autism will make their adults lives easier and happier? Are we afraid to have children who are blind, or have ADHD, or who have orthopedic issues interact with the child with Autism? I know that I have heard many, many times that “I don’t want my child around that child with Autism. He will learn even more negative behaviors.”

Umm….So is inclusion only good when it suits us – when we think our children with disabilities will learn positive things from others? Are we being a tad hypocritical?

Guest Post: Experiancing Disability by Emma

My first guest post is by Emma of A Writer in a Wheelchair. She describes herself as "a 28 year old Brit who loves to write and spends her life on wheels." I'd write more of an intro, but I'm late getting this up and am rushing to get ready for a wedding. If you like what you're reading please take a look at Emma's blog. I hope you don't mind me using your facebook photo. Thank you for writing Emma!

I was thinking the other day about what happens when people who aren’t disabled experience the world from wheelchairs. I suppose similar things happen when they try other sorts of equipment but it’s always wheelchairs that get mentioned to me.

A friend of mine had brain surgery when she was younger. It was a couple of years before I met her and I’ve known her about ten years so it was a good while ago. I’ve heard her on several occasions talk about the (I think) couple of months she spent in a chair whilst recovering. The thing she seems to have taken away most was the memory of places she’d always gone, shops etc, that she couldn’t whilst she uses the chair. She’s literally used the words “You wouldn’t believe the places you can’t go” to me before. And all I could think was “Well, actually, I could.”

Someone else I know had a very nasty accident and again was in a chair for a long while (and then on crutches for a while more). We don’t know each other well but the first time we saw each other once she’d recovered a bit she was telling me how she knew what I go through now. And how she’d gone out for lunch and been shocked to find she couldn’t get in. She’d ended up making a formal complaint.

I just wanted to say “Welcome to my world” – she didn’t know what I go through but she’d gotten an idea. And my trip out to lunch wouldn’t have been ruined because I would have checked in advance out of necessity. Either I would have gone somewhere else or (if she did go where I think she did) I would have known from speaking to them that they have moveable ramps to get you in.

Actually, that makes me think of another example which I wasn’t going to include but I think I will. I recently went to a barbecue at someone’s house for members of a group we both belong to (it belonged to someone’s daughter I think). I wasn’t able to go to the toilet because of where cars had been left belonging to people who weren’t there, room for people to get through but not those of us on wheels. We spoke to the organiser and he suggested we go through another door. I pointed out that it had a step and he said “Oh, does it?”

I know several people who have done disability awareness courses and whose experiences on those courses have had a lasting affect. One guy I know who went on one is adamant more people need to do them (he works doing customer services for a train company and helps a lot of disabled people on and off of trains which actually is how I know him). Seeing the opposite side has obviously helped him a lot. Apparently one local organisation that runs those sorts of disability awareness courses always sticks people in wheelchairs and sends them to a specific take away because they always ignore people in wheelchairs.

Personally I’m not 100% convinced that more people do need to do them because I think that makes too much of it and perhaps even lessens their impact. But I do find it interesting to see how people react. However I would love to come to a day where people don’t react like that.

A positive story to end on. My parents took a relative with them to a funeral. She’s elderly and they took an old wheelchair with them for her to use. Afterwards she spoke to my parents and apologised because she never realised how hard being in a chair can be. I don’t think I would have agreed with that specific phrasing but I do know what she means. And it was a reaction that is much, much easier for me to deal with.

How have you found that others react to experiencing disability?

ADAPTers KICK ASS!

Found through Wheelie Catholic via Regator

The Proloquo2go Creator ABC Interview

So I was surfing around the blogsphere, reading blogs I've never read before, clicked on a commenter, looked at her blog, clicked on something she linked to, and found a video of a very young girl with CP learning how to navigate her IPad. From there looking at the related videos on the side of the screen, I found the ABC interview. If you use my search on the top of my right sidebar (not the one all the way on the tip top left) you can see there are several posts about CP kids trying out Ipads/pods (from before IPad), there is even another one I found through Alltop, there are some articles about autistic kids and proloquo2go, but these are the first videos I've seen. I also thought this video was cool because it's the creator. Anyone have any thoughts on this device? Please share.

Empowering PWDs Blogswarm

I just found out about this event from Glenda and have copied the info below. Yes, I will be writing. I know... what a shocker. I hope some of you join as well. Here, copied from a previous post, is my definition of what a blogswarm is:

A blogswarm is like a blog carnival on a larger scale, where as many as hundreds of bloggers (as opposed to 10s like in a carnival) commit to blogging on a certain topic on a certain day, usually in hopes of gaining mainstream media attention or just greater awareness and understanding of an important topics. Here is the Anti-telethon Blogswarm (Kara, please update one of your blogs), DUH City & of course the ever popular BADD 2009.

Hello Friend,

I just wanted to take a second and let you know about an upcoming BloggersUnite event, People First: Empowering People with Disabilities. It is taking place on July 24, 2010 and the goal of this event is to raise awareness about the challenges that face people with disabilities every day and how we can help eliminate these challenges.

By sharing stories of how you, a friend, a colleague, or maybe a family member have dealt with the challenges of living with a disability, we can raise awareness about this issue and bring down some of the barriers to equal accessibility and participation that exist today for people with disabilities.

If you don’t have a personal story to share, you can still help! Write about an organization that provides support to people with disabilities or that is helping to provide equal access. Let you readers know some facts about the number of people living with disabilities, the challenges they face, and how each of us can work towards creating a society that provides equal access to everyone regardless of our physical or mental abilities.

Whatever you choose to write about, we’d be thrilled to have you write a post as part of this event. Read more information about the event.

Thanks for reading and have a great day,

Jason Teitelman

Apologies for my Lateness: A Survey

I was just cleaning out my inbox and found a FB message from Beth of media dis&dat about her survey (which I pretested) that went live 2 weeks ago. OOOPS! Well, I am promoting it now...

GO TAKE IT. NOW.

There. Promoted. I feel better.

Here's a little blurbish:

Hi there. A colleague and I have created a survey about news and entertainment media so disability advocates can give their opinions about this important issue. I hope people with disabilities in general and those from disability organizations will take the survey. Can you take the survey and then send it to your contacts? Thanks!

Please forward the survey widely.

Tell everyone that we are happy to provide the survey results to anyone who wants them.

Here is the survey link: http://www.surveymonkey.com/s/CQ8BLFG

Who Says Autistics Don't Have a Sense of Humor

Anyone know what day this was on TV?Thanks Ellen for pointing me towards this video

Autism Referral in a Jiffy

I found this video while I was doing a google image search for something I did not find. I did however find a picture of Glenda, clicked, and found Irked Magazine, where this video is located. Any of you know this blog? I've never heard of it & it's been around since 2006. It looks like there's cool stuff on there.