michaeldthomas: (Default)
I just found this on Jonathan Carroll's Twitter stream. Aardman Animation -- makers of Wallace and Gromit -- did a cool series of PSAs in the UK about how to view people with disabilities. This is done in the same way as their show Creature Comforts where they animate real people telling their stories.
michaeldthomas: (Caitlin 08)
[livejournal.com profile] haddayr just posted a link to a wonderful blog called The Deal with Disability. This is the blog of a young woman with severe disabilities. She uses the blog to show and relate some of the crazy ways that people treat her. If you're curious about how the world will look to Caitlin as she gets older, this is probably the best way to understand it.
michaeldthomas: (Caitlin 08)
After a weekend of much needed house cleaning and yard work, we spent the afternoon shopping at Trader Joe's and Target. Caitlin LOVES Trader Joe's. We tend to zoom around and pop a lot of wheelies while we're there. I think it's due to all of the free coffee in my system. :-)

For whatever reason, there were a lot of little girls Cait's age at the store today. Caitlin tends to attract stares. This can bother us when it comes from adults, but we're pretty cool about it from other kids. As we were traveling down the dairy aisle, a little girl was really boring into Cait with her eyes. When we got closer, she said to Caitlin, "How nice it is to see you."

How awesome was that? She then turned to her mom and asked, "Why is that girl sitting in a chair?"

The mom looked like she wanted to grab her daughter and run to the hills. She sputtered and I responded, "That's Caitlin's wheelchair. She can't walk yet."

The girl then got closer to Cait and said, "I really like your Hannah Montana shirt."

Cait just lit up. The mom sputtered a bit more, looked at us with pity, and said, "Come on, we need to get going."

Why can't parents be as cool as their kids?
michaeldthomas: (Caitlin 08)
As if I don't have enough to be angry about today.

Via [livejournal.com profile] were_duck

USA, Canada, and the EU, among others, attempt to kill a treaty designed to protect blind and other disabled people's access to written material.

"The main aim of the treaty is to allow the cross-border import and export of digital copies of books and other copyrighted works in formats that are accessible to persons who are blind, visually impaired, dyslexic or have other reading disabilities, using special devices that present text as refreshable braille, computer generated text to speech, or large type. These works, which are expensive to make, are typically created under national exceptions to copyright law that are specifically written to benefit persons with disabilities...

[. . .]

The Obama Administration was lobbied heavily on this issue, including meetings with high level White House officials. Assurances coming into the negotiations this week that things were going in the right direction have turned out to be false, as the United States delegation has basically read from a script written by lobbyists for publishers, extolling the virtues of market based solutions, ignoring mountains of evidence of a "book famine" and the insane legal barriers to share works. " --(from the link above, authored by Cory Doctorow)
Please repost and spread the word on this!
michaeldthomas: (Caitlin 08)
Monsters are real.

Nice day

Apr. 22nd, 2009 06:58 pm
michaeldthomas: (Default)
The weather today is dry and cool. I'll take it. Here are some quick things while [livejournal.com profile] rarelylynne is off doing the Rare Book thing in French.

1- I've managed to increase my volunteer workload again. I'm now on the RAMP Wheel-A-Thon Steering Committee (RAMP is our local disabilities advocacy agency). Many of you might remember our fundraising efforts last year. It shouldn't be too much of a time sink (I hope). I'm also going to be working with the City of DeKalb's IT department as they redesign the city's website. I'm the member of the Disabilities Commission who will help them with ADA compliance.

2- I spent the afternoon out at the independent coffeehouse. It's called The House. I'm usually only they for evening live shows since they're closed in the morning. The place is a mix of aging hipsters and NIU art kids in retro-kitsch surroundings (so much velvet). I sat there drinking my coffee, reading Gregory Frost's Shadowbridge, and eavesdropping on conversations. Good times. It was nice to get out of the house and actually take some time off. Also, very little has changed since my coffeehouse days over a decade ago. It's like college culture got frozen somewhere around 1994.

3- The Cubs are still chugging along. Dusty Baker's Reds...not so much. We're not a perfect team, but our division blows. The Cardinals and Brewers have good points, but the Reds, Pirates, and Astros are putrid.
michaeldthomas: (Default)
1- Caitlin is better. She's having fun at school as I write this. We meet with Make-A-Wish tomorrow. :)

2- I had a nice meeting with the The City of DeKalb IT department. The Disabilities Commission is currently working with all of the city departments to survey their compliance with the Americans with Disabilities Act. IT is now planning on working closely with us to make sure that they incorporate accessibility into their website redesign.

3- I want to apologize to anybody I offended yesterday on Twitter or Facebook. I was stressed and made a goofy and tasteless comment about the Tea Party protests. I put my foot in my mouth, and I am sorry.
michaeldthomas: (Caitlin 08)
Retard.

Retarded.

We've all done it. We toss that word around when we think something or somebody is beyond stupid. Retard is meant as an extremely derogatory term.

It is hurtful. It is dehumanizing. People with intellectual disabilities deserve the same respect that is given to others. Like the n-word, the r-word needs to go.

Special Olympics designated today as "Spread the Word to End the Word" day. Please join the movement.

Here is an awesome speech that was given by an Illinois high school student a couple of years ago on the subject. I recommend watching it.
michaeldthomas: (Default)
There are horrible people in our world.

I can't begin to express how angry I am about this story.

STFU

Mar. 8th, 2009 12:03 pm
michaeldthomas: (Default)
I wanted to re-post this from [livejournal.com profile] maryrobinette's blog. Beth Wodzinski, Editor in Chief of Shimmer, wrote some smart things in the Apex blog:

“The real lesson for me is one I’ve had to learn over and over, in every area of my life: shut the fuck up and act. Do something. Get on with it. You can’t just sit there paralyzed by how huge or impossible the task is and how hopeless and despairing you are; none of that actually matters. What matters is taking action. You have to just jump in and do it anyway. I don’t care if you’re talking about writing a novel or running a magazine or painting your kitchen or finishing a triathlon: if it’s something you want, then STFU and do it.”

I understand anger. You see, I am a very angry person. That kind of happens to you the first time you have to inject your three-month-old daughter with an extremely dangerous steroid in order to try to stop her brain-damaging Infantile Spasms. I also understand bullshit intellectual one-upmanship. I didn't learn much from my time at the Illinois Mathematics and Science Academy, but I did learn how to have a nice hollow, spiteful “discussion” about a controversial topic. It was how we passed the time.

I couldn't cure Caitlin of Aicardi syndrome, but I saw that there were other ways to channel my anger. I followed the example of other parents who became advocates. I volunteered for national and local organizations that helped make the world a better place for people like my daughter.

Some of these organizations made an impact. Others devolved into people having hollow, spiteful “discussions.” Anger and hopelessness will do that. Nevertheless, I keep trying to make the world a better place through my actions.

The bottom line is shut the fuck up, get off of the blogosphere, and find a way to contribute to the solution.
michaeldthomas: (Default)
Caitlin is awake and pleasantly stoned. She's currently eating and waving her lightsaber at Hannah Montana.

Unfortunately, she slept through the surprise visit from our awesome friends Laura and [livejournal.com profile] kellymccullough. It's always nice to see people when we aren't all running from panel to panel.


The rest of the night should be low key. Lynne is making sausage and peppers. I'm sure we'll watch some DVDs at some point.

There was a great article in Parade today about Presidential Adviser David Axelrod's family and epilepsy. Please check it out.
michaeldthomas: (Caitlin 08)
I am very hopeful that President-elect Obama will be supportive of the needs of people with disabilities. The main reason I believe this is that his chief adviser David Axelrod has an amazing daughter with special needs. David Axelrod has a history of being an advocate for individuals like his daughter. I am sure that he will continue that now that he has a national platform.
michaeldthomas: (Caitlin 2)
I wanted to say hello to all of my new friends and readers post-WisCon. Since you decided to subject yourselves to my blathering, I should probably give you a fuller introduction of myself. Along with being a Doctor Who nonfiction writer, aspiring SF novelist, and husband to the hottest Rare Book Librarian in the world, I am the full-time caregiver to my medically complicated, special needs daughter.

Caitlin is an amazing five-year-old girl with a wicked sense of humor and a great deal of love for the world around her. Caitlin has an extremely rare congenital condition called Aicardi syndrome. The syndrome is characterized by brain malformations (ACC), eye malformations (retinal lacunae), and severe epilepsy (infantile spasms). Caitlin has major physical delays and communication problems. She is also a silent aspirator who is unable to eat or drink by mouth (she has a feeding tube that goes directly into her stomach). Caitlin by the standards of the disorder has thrived. She can do some sitting and assisted standing, she can communicate with sign language and her device, and she is at age in cognitive abilities (she knows her colors, letters, numbers, and some written words).

I work with her and coordinate all of her life. This includes work with doctors, teachers, nutritionists, therapists, insurance companies, and medical suppliers. I am also a volunteer for many organizations that deal with people with chronic medical conditions and disabilities. That’s about the gist of what I do.

Caitlin had a good weekend away from us. My family worked as a team to watch her while we were at WisCon. She even got to go to the zoo. We really appreciate all that they do for us.

This is a bittersweet week for the family. Caitlin is almost done with the Early Childhood program at school. Her last day is Monday. She starts kindergarten in the fall. Next week is the big IEP meeting to determine her placement and services at school. It looks like it’s going to be a smooth meeting. Caitlin will be placed in a special program for most of the day, and included in the regular kindergarten class for the rest. As far as I know, she should still be getting all of her school therapies at the same levels. IEPs are always a little tense, so hopefully this one will be uneventful.

In sadder news, one of Caitlin’s playmates from summer school passed away. My heart breaks for the family. It’s a shared fear that we live with everyday. There was a nice article in the local newspaper about how Caitlin’s new school dealt with his passing.
michaeldthomas: (Caitlin 2)
Caregiver Edition.

1- There was lots of Aicardi Conference Planning silliness this week. It was the pretty typical committee breakdowns with miscommunications and misunderstandings. I am fairly aggravated by things at the moment. It will be sorted out in the end, but at the moment it’s just more fodder for me leaving the “organization” after the conference.

2- The City of DeKalb Advisory Commission on Disabilities meeting went well. It looks like the mayor is reappointing me for another two years. We have some great plans for the future. The only crazy thing from this meeting was the commission having to deal with an individual who is going around town pretending to be a member. It wouldn’t be so bad if this individual wasn’t aggressively confronting business owners and landlords and threatening them with his nonexistent power to levy fines. We are tackling this the way every commission tackles issues; we are issuing a strongly worded letter.

3- Caitlin had a good, healthy week. We were even able to go out and walk in Downtown DeKalb thanks to some good weather. We are getting a Tapas restaurant there, which is kind of cool. It was a nice walk, but it is frustrating that a good number of businesses aren’t even remotely ADA compliant.

4- Caitlin’s transition planning has started. Next fall she will be in Kindergarten at a new school. Change frightens me.

5- Caitlin’s OT is also leaving the Elgin Easter Seals. This really sucks. We like her a lot, and she’s been with Cait for years.
michaeldthomas: (Default)
Real life has been rough for the last two days. Yesterday was our yearly run to the Pediatric Ophthalmologist. Caitlin was in a good mood and behaved for all of the testing. Nothing in her eyes has degenerated any further. Caitlin was also able to show the doctor how well she is using her vision. Considering that the girl has damaged retinas and optic nerves, she’s taking in quite a bit.

We then went to see my grandmother at the hospital. Things are very bad. It was extremely difficult seeing her in that condition. This is not the first time that I’ve been there for a loved one’s end of life, but it’s always a stomach punch. She still recognized me, but she’s otherwise fairly unresponsive. My grandmother is a shell of the magnificent woman that helped raise me.

After that we rushed home and picked up [livejournal.com profile] rarelylynne. I then went to The City of DeKalb Advisory Commission on Disabilities meeting. It seems that the commission will survive the current city budget crisis.

Today I was digging myself out of Aicardi Syndrome Family Conference business. I think that I wrote about 30 emails today. At least everything with it seems fine so far.
michaeldthomas: (Caitlin 2)
I’m sitting at Panera writing, and a group of special teens just came in for breakfast. One of the girls is in a similar wheelchair as my daughter. It’s even razzleberry colored like Caitlin’s. I’m on the verge of tears, and I’m not quite sure why.

It’s wonderful to see that we are not alone, but it’s also a bit terrifying. When I was growing up, children like my daughter were mostly institutionalized. Even now, it’s very rare that we see other kids as disabled as Caitlin is when we’re out and about. In some ways, it makes it easier for us to forget how disabled she is. She’s just Caitlin. Seeing others like her and watching how others treat them make it all more real. With that reality comes the dark understandings of my daughter’s future, no matter how much she’s currently thriving.

I also keep getting distracted because that girl is making similar sounds to Caitlin. My brain knows that Caitlin is at school, but my father instincts are locked a certain way.
michaeldthomas: (Default)
Yesterday kicked my ass. Not necessarily in a bad way, but I’m really tired today. Yesterday went like this:

1- Brought Caitlin to school.
2- Went to Panera and worked on the novel.
3- Came home and packed Caitlin’s portable feeding pump.
4- Picked Cait up from school, and we went to a lunch meeting for the City of DeKalb Advisory Commission on Disabilities. It went well.
5- We left the restaurant and drove 45 minutes to the Elgin Easter Seals for Caitlin’s occupational therapy appointment. She went on the swing and worked on the computer. Caitlin had fun.
6- Drove back home for dinner.
7- I had an hour and half teleconference with the 9th Biennial Aicardi Syndrome Family Conference Agenda Subcommittee. The schedule is starting to take shape.
8- Bed.

Today should be a little better. I’m writing at home since the weather is finally good enough for the gutter guy to come back to work. This is especially important since I currently have no gutters.
michaeldthomas: (Caitlin 2)
And so ends another winter week in the Barb City (they invented barbwire in DeKalb dontcha know).

This week featured my City of DeKalb Advisory Commission on Disabilities meeting. It was a bit of a bummer. The city is having financial problems. This is not a shocker. You see, like many cities, DeKalb has had years of growth by giving developers and businesses big tax breaks and no impact fees. As my friend Sarah pointed out, if you play Sim City enough, it should be obvious to you that eventually you will pay the price. We are there. The infrastructure isn’t in place to support a city our size. The general fund was $500,000 short last year, and the city manager is eliminating 20 jobs to compensate.

This is a bad thing. It seems that one of the commission’s biggest allies might be part of the forced retirements. This person was instrumental in us getting anything done for people with disabilities. These financial problems also make the future existence of our commission a bit cloudy. I am not happy about this.

We’ve done some good things while I’ve been a member. The commission was able to get most of the city to change the accessible parking sign fine amounts to reflect the changed state law. Businesses had been ignoring it until we started going business to business. We’ve also been able to make sure that new building plans comply with ADA. Additionally, we started working with the Park District in order to bring more accessibility to the parks and playgrounds. My daughter can now swing during recess because of this.

Hopefully, the commission will evolve and continue to do good works. It would be a real shame if couldn’t because of poor planning. People with disabilities need a voice. My daughter and everybody like her deserve a city that complies with federal, state, and local law.

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