Sea Princess

Cruising is one of the best ways to visit new and exciting places around the world. I've been on three of them now, the most recent ended a few days ago when I returned from a Princess cruise to Alaska. The cruise was 10-days long and featured shore time in Ketchikan, Juneau and Skagway Alaska as well as a day in Victoria British Columbia. Without a doubt, Alaska is one of the most beautiful places in the world. However, for those of us with disabilities, the journey can be tricky at times.

Photo of Ray Sandford. Photo by Daryl Trones of City Pages.

DisabilityNation has continued to follow the story of Ray Sandford for the past few months. Back in April you'll recall that Ray's psychiatrist quit giving hope that the forced shock treatments he was receiving would soon end. Last week an article appeared in City Pages that did an excellent job of describing what Ray has been subjected to because of these treatments. City Pages is the main weekly newspaper distributed throughout   Minneapolis/St. Paul, Minnesota.

Photo of a computer monitor next to a desktop computer tower.

We've all been there, busily working through that to do list and then something completely unexpected gets thrown our way. That was exactly what happened recently at work. It was late in the afternoon and I was trying to get a number of things done before the end of the day. Suddenly, my boss stopped in with a gentleman who was in need of assistance. She explained that he was working up until about 2 weeks ago when he was let go due to budget issues. He was once receiving SSDI benefits and now wasn't sure what to do at all. Thinking that I could help him with the benefits issue and possibly assist him in finding another job, she left him with me. And, did I forget to say he was deaf and did not read lips?

While some readers may find the above video shocking, anyone who has half-way paid attention to recent happenings related to disability issues in the state of Texas won't be surprised at all.

Several months ago we began hearing about the personnel issues with staff working at Texas state schools (institutions). it turned out that dozens of employees had once been fired or disciplined for abuse and or neglect of those living at state institutions and then were rehired again. And now videos surface showing staff at one of these state schools arranging for and carrying out fights between those living in the facility.

I was lying in bed last night watching "Serendipity" which somehow misses being a good film, despite having a lot of my favorite actors in it. This gave me a lot of time to consider which tiny, or not so tiny, want or need from my ever-expanding list I might satisfy, using next month's extra stimulus money.Though the list was crowded, nothing really seemed like the One Thing. It was too bad, I thought to myself, that disabled people as a group were always so poor. Otherwise we could pool our money and maybe get a lobbyist that wasn't one of us with a touchingly handmade sign and a heart of gold. Though I believe in people power and that whole Margaret Mead small-group-of-committed-people-changing-the-world thing, and have some protest stories to prove it, some times it feels like taking a gun to a knife fight. Or maybe, it's just like America itself, and I have missed its best years.
"But, Erika," I told myself. "You don't like lobbyists."

In a strange way, the most authentic representation of disability on TV right now is American Movie Classics' "Breaking Bad", and not just because the son is played by disabled actor R.J. Mitte, although that helps. Mitte's Flynn is a multi-faceted character who is doing his best to grow up and away as everything he's always known about his family comes apart. It's a strange claim to make about a family drama/dark heist comedy, but I can't miss it.

Several months ago I posted news about Ray Sandford, a man from Minnesota who was undergoing forced electric shock treatments because of his mental illness. An organization called Mind Freedom" has been supporting Ray's efforts to end this involuntary treatment. This update comes via a press release issued by the organization late last week. The text of the release follows:

The bad news is that this morning, 15 April 2009, Ray Sandford of  Minnesota had another involuntary, outpatient electroshock, also  known as electroconvulsive therapy or ECT.

The good news is today's forced electroshock could be Ray's last.

Larry: Photo of Larry Wanger, founder and producer of DisabilityNation.

For the near 3 years that DisabilityNation has been on the web I have worked to bring together interviews, news and information that you, the reader and listener would find most helpful. And, over that time many of you have provided comments, suggestions and great ideas that have helped to make the program even better. However, producing, recording and editing a program like DisabilityNation takes time and a lot of effort. Both of which seem to be lacking at the present time.

The North Pole has now been made wheelchair accessible. On April 11, 2009 a disabled parking sign was raised at the North Pole on the 100th anniversary of the first successful polar expedition. David Shannon became the first person in world history with quadriplegia and in a wheelchair to reach the Pole. He along with expedition co-leader and fellow Canadian, Chris Watkins, developed "Team Independence 09" to promote breaking barriers to accessibility and greater community inclusion.

David upon reaching the pole stated, "This sign represents all peoples who have faced challenges or adversity in their lives and have dreamed of overcoming them. If we as people, work together in our homes, our cities, our countries and in our global village, there is no dream that cannot be realized."

Chris Watkins who himself was injured in 1988 stated, "David and our team represents the long-shot win of the underdog. But it shows that there is no dream too big to dream and no challenge to big to overcome. What David has left us with is a world of infinite horizons."

My attendant-services file says I'm a creative, highly intelligent young woman.
In addition to the embarrassments inherent in having an attendant file, I'm feeling relegated to life's kids' table by that remark, although I suppose it was nice for the last worker to write in it to leave things on a decent note.

And I'm not an old woman, for sure, but at 35 years in this body that wasn't even supposed to leave the hospital, ain't I a woman? Full stop?
I ache like a woman, I want things like a woman, I 've got debt collectors mispronouncing my name like a woman.

Can we let "young lady," take her seat on the graveside of my personal history along with channels ceasing programming at midnight,3 1/2 floppies, and my regrets about not winning all those slamming MTV "Let A Rockband Take Over Your House" contests from back when?(I suspect if I had won, it would have created a huge PR challenge, though. Everybody wanting to trade places with the crippled girl. OMG.)

Myron Uhlberg's memoir of growing up with deaf parents, Hands of My Father, has already attracted a lot of attention in the mainstream press for its depiction of how much responsibility young Myron assumed, acting as his father's interpreter from about the age of six...he doesn't mention doing this in quite the same way for his mother...maybe the neighbor women were more patient at accepting handwritten notes or maybe she was content to allow her husband to be the public face of her family in the world...it's hard for a frustrated wannabe egomaniac like myself to believe there were ever women that domestically inclined, but that's material for another book.
It is hard to believe that only within one person's lifetime, there was no closed-captioning and no way for ordinary folks to get sign-language interpretation, even when their seizing second child needs a doctor.

I don't know what I was expecting from a film called "Autism: The Musical." It was just a title that attracted my attention, even as a dark-humored part of me wanted to suggest that it should be a rock opera to better accomodate all the head-banging. Yeah, yeah, I know. Elaine Hall founded the Miracle Project to use her theater-directing skills to enhance the journey that began when she found out her adopted son Neal was autistic. The miracle project is designed to help autistic kids express themselves through music, dance, and acting, which I started off being very skeptical of.

In one way, I understand why schools and businesses continue to do disability-awareness day simulations. It can be difficult to talk about disability, and it seems that many non-disabled people are fascinated by our shiny assistive devices, so a day spent playing crip-for-a-day could only be in good fun, right?

At least, that's what I heard about the one I went to as a teenager. But I'm older now, and more political, so the idea that someone could learn what my life is like from strapping into a wheelchair for a few hours seems as ridiculous to me as trying on the male experience by gluing on a cut-hair mustache and calling myself "Hank'. Maybe I would even learn some tiny superficial truths about how guys relate to their world by doing that, but it wouldn't be like experiencing life as a guy. Tying on a blindfold and being shocked by sudden darkness is not like being blind either.

But I guess I could put it in a box with other related behavior such as people passing my wheelchair and cheerily asking "What's the speed limit on that thing?" or the urge people seem to have to try on each other's glasses. Dorky and incomprehensible, but harmless.

Something old and something new for my pop-culture report this week. It really is heartening how much more of the disability experience can be found on DVD of late.

Watching childhood favorites can be a mixed bag, even when you aren't trying to be Social Security Cultural Critic. Some of them just don't hold up to informed scrutiny(Most of the Star Wars trilogy) the discovery of irony(Batman as played by Burt Ward and Adam West) or just the fact that watching vans blow up isn't your idea of a good time anymore(The A-Team) so even though Mom and I agreed to start watching The Rockford Files together about two years ago, I was kind of afraid of facing that same letdown, but Jim Garner, always and forever, turns my mom's crank, and it was a detective story, so what would be the harm?(It's where I learned about two things: The power of a wiseass' smile and the existence of machines that record phone calls, both things that would haunt much of my later life.)