I don't usually put real-life, completely direct information in my blogs, but for this I will make an exception.
When I was younger I worked at Barnard College for what used to be called the "Office for Disabled Students." (It is now called Disability Student Services or somesuch.) In the past I had also been a Candy Striper for Holy Name Hospital. I have always been involved with the Disability Rights movement since I was first politically active.
The most interesting thing about the job at Barnard was that I was the same age as the students that were utilizing said services and I got to see a large gamut of very smart, accomplished, young women with wide range of disabilities making the transition from childhood to adulthood, while I was doing the same thing.
As the administrative assistant to the Dean for Disabled Students and the Assistant Dean, I was the one who kept them company while they were waiting for appointments or when they set up camp waiting for the deans because they didn't have one. I worked on wheelchair access issues, computers and disability, getting Ivy League professors to meet 504 requirements and admit that Ivy league disabled kids still were entitled to some accommodation, and that it is not appropriate to say to a pre-med student that someone can "just carry her up to the steps of the class" if her wheelchair can't get in the room.
Some of our students were born with disabilities, some acquired them through illness, some through accident. Disability is the only minority anyone can join at any time.
But the one thing I knew, because we were all 18-24, was that our teenage years were very close to our childhood years. None of that fuzzy haze caused by being grown up. Our students with cancer and with cystic fibrosis and other disabilities were Ivy League students with amazing writing and speaking skills and often approached by different groups as role models for younger people with similar disabilities and diseases - so they wrote and spoke for various groups and charities a lot. We provided support for student activism too, so I was lucky enough to work with them and sometimes help them polish their presentations.
One of the things I heard a lot was what life in and out of hospitals for long stays was like for them. They wanted to do normal things, they had chronic illnesses but they weren't dying. They were still just kids. I learned about how to clean stuffed animals without losing too much fluff for kids to take them into the hospital. I would hear stories about doing makeup and trying to find way to make hospital gowns more like fashion when they were tweens, about how they hated all the hospital "themed" toys that the hospital had. . They wanted normal dollhouses dolls and play supermarkets and toy cars. A lot of hospitals would only have toys that "helped them accept the hospital environment". There were some toys that they couldn't play with because they presented risks to other kids on the floor (a lot of longterm wards mix the terminal illness with the "in-treatment" kids for various reasons like socialization or at least they used to - I've been concentrating on 508 enforcement these days so I'm less in touch).
So the thing is, these wonderful, successful, smarter-than-me young adults that happened to have disabilities had far more weight than the the studies that show what "helps" made by doctors and scientists. At least for me. And what I learned is that kids with disabilties stuck in hospitals for months instead of weeks, or years instead of months, or scheduled for long stays for care management between periods of living on the outside, want one thing universally. The same exact things the kids who aren't disabled do.
Later when I was a toy reviewer, I used to try to donate the toys directly to long term care children's wards and ran into the "only if it's a hospital, or doctor's office playset" rule directly. Not all long term wards but an awful lot. I hope that this is changing. Playmobil Castles are for everyone dammit, and that goes double for Pirate Island!
It almost seemed like because kids had medical conditions all the grownups wanted them to do nothing but face reality, and they left no room for normal imagination and dreaming.
And frankly that just sounds like the exact opposite of what's good for children who are NOT dumb and all too aware of their reality.
So What's Going on? And what are you doing about it?
So here is Lollipop Theater - a charity that wants to bring first run movies that are actually in the theater to the kids who are in hospitals (and I hope maybe someday for the kids who can't go to a regular theater because of autoimmune issues).
Movies are a gateway to imagination and dreaming.
It is exactly the kind of thing those students talked about back in the day - where they can have experiences and conversations about regular non-disability related things with everyone; abled and differently abled. It's not escape we're giving these kids, it's just little bit of everyday life and admitting that a disability doesn't define them - being a kid does. And providing them with things that let them just be kids - like the same movies their classmates are seeing.
I can't even explain how important this is. Just trust me. Or talk to your friend with CF.
So if they can't get to the movies - lets get the movies to them.
Craig Ferguson ( who is awesome) joined twitter - which I have only recently joined - they are hosting a Tweetathon on April 5 to raise money and awareness.
Here is a video that explains things a bit:
If you tweet please help spread the word tomorrow - I've kept a very low profile so I only have 7 followers, I'm sure anyone reading this has more. I'm @DreamtimeDrinne
Please tweet with the hashtag #lollipoptheater on all your outgoing tweets.
It would be even better if you could donate a little bit too.
