Shoulda, Woulda, Coulda

Should

"Should" is most commonly used to make recommendations or give advice. It can also be used to express obligation as well as expectation.

Examples:

• When you go to Berlin, you should visit the palaces in Potsdam. recommendation
• You should focus more on your family and less on work. advice
• I really should be in the office by 7:00 AM. obligation
• By now, they should already be in Dubai. expectation

I have been told never to use the word "should," as in "I should volunteer more in the class room,"or "I should lose 20 pounds." But without "should" how would things get done?

In these past few weeks I have often thought "I should write in my blog,"and "I should check out the posts of other bloggers and write some comments." After all, I am a blogger, no? But, I have been so burnt out and stressed that when I did have time to fiddle on the computer I found myself searching for new songs for my Ipod instead of "blogging."
So, now I have over 400 songs on my Ipod (I'm neck and neck with Jacob for who has more songs) but I have fallen off the blog wagon a bit. My vow, once Labor Day comes and goes is to re energize my blogging. But, of course, there could be a part of me saying "You really should be writing that article" or "You really should winnow down that laundry pile." Does it ever end?

RealAbilities Film Festival: An anidote to Tropic Thunder

The first annual RealAbilities Film Festival is getting underway next month in New York. This festival is "dedicated to promoting awareness and appreciation of the lives, stories and artistic expressions of people with different disabilities. Discussions and other engaging programs will bring together the community to explore, discuss and celebrate the diversity of our shared human experience." And that includes not only film makers but also actors, including Sigourney Weaver of Snow Cake.

Take a look at the line-up of films; even if we can't be there it is wonderful to read about films out there that get beyond Hollywood and Jerry Lewis stereotypes. In February I wrote a post, Why not a Disability Film Festival? and here one is. I love it when other people implement great ideas!

I also appreciate when other writers express ideas and thoughts better than I can. In this case, Patricia E. Bauer has written an essay in the Washington Post in response to the movie Tropic Thunder, which has sparked protest among disability groups for its degradation of people with intellectual disabilities. I suggest you read her words: A Movie, a Word and My Family's Battle. And take a look at one Public Service Announcement that was created to counteract the negativity of the movie: When You Can Call Me....

If only this video and the RealAbilities film festival could garner the publicity and exposure of Tropic Thunder! Do you think it would make a difference? Why or why not??

Spiritual Inclusion: What are your experiences?

A recent article, Disruptive behavior by autistic kid stirs furor, discusses how a priest in Minnesota recently banned a 13-year-old boy with autism from his church after parishioners complained about his behavior. The priest claimed that the youth was disruptive and dangerous, although the boy's mother felt that the congregation's claims were exaggerated.

The article goes on to discuss a broader issue - when is it/isn't it OK for people with autism and other disabilities to be disruptive in public? What responsibilities do parents have to the public at large, and what responsibilities do congregations and other facilities have to include and accommodate persons with disabilities?

An article in the Oregonian, Portland houses of worship try to include challenging members, offered a local view of the issue. This article was quite a bit more optimistic, and features examples of positive inclusion of both children and adults in worship communities in the Portland area.

What has your family's experience been in the spiritual arena? Have you been able to include all your family members in spiritual practices, rituals, places or worship? What kind of comfort have you found - or wished you could find - by such inclusion?

Read it and Weep: " In Switzerland, An Easier Path For The Disabled"

A recent series on National Public Radio explored health and social programs in Switzerland. The final piece, "In Switzerland, An Easier Path For The Disabled", compares the life of a family in Switzerland who has a 16-year old daughter with autism to the life of a family in Massachusetts that includes two teenage daughters on the autism spectrum.

Switzerland, like many other European countries, has a cradle-to-grave public support system for families. Switzerland has a government-paid disability insurance system that pays for education, behavioral therapy, household help, special equipment and so on. Just as important, social workers and caregivers share responsibility with parents for ensure that children are taken care of through the life span.

The mother in the Swiss family is an ex-patriate American, and she feels very fortunate to live in Switzerland. According to an article that accompanies the broadcast:

But as Tara grew into an adolescent, Wallace [her mother] began to get anxious. She wondered what would happen to Tara after she and her husband died. So Wallace went to see her social worker.

"She said the really key thing to understand is, you don't have to worry," Wallace recalls. "The way the Swiss government approaches this is that every person who is a Swiss citizen has the right to be able to live decently.

"For me, that was just like such a huge wave of relief — to have somebody tell you, you don't ever have to worry about how your child is going to be cared for."

The featured family in Massachusetts, in contrast, feels fortunate that they have the personal resources to provide for their daughters, since there are few public services available - and the state of Massachusetts offers more than many. These parents are also concerned about the future of their children and in response purchased a 10-000 square foot former convent as their home. The long-range plan is to convert it into a group home for their daughters and other disabled adults and staff.

While I admire the creativity of these parents, it just plain depresses me that such heroics are necessary to provide for our children in the United States, while other countries have extensive systems in place to care for people with disabilities. And perhaps just as important, the culture of these counties is based on the premise that of course families shouldn't need to go bankrupt to give their children necessary educational, therapeutic and recreational opportunities.

I know there are folks out there who will shudder at the ills of socialized medicine, but it doesn't seem to me like the free market health system is working for our families. What do you think?

Ipods and Midlife - What hearing loss?

We hear a lot about the dangers of how Ipods and MP3s can damage the hearing of teenagers but what about us in midlife? How loud is too loud, and at this point do we think "Do I need all my hearing capacity, anyhow? Maybe I'm better off not hearing everything around me?"

I am 1/2 deaf and I'm careful not to go to loud concerts - witness my decision not to see Bruce Springsteen at the Rose Garden. But I wonder if I am doing damage bit by bit by listening to my Ipod? Doing so, however, is such a stress reliever and personal training tool that I'm loathe to give it up. And I just can't/won't listen to "Cruel to Be Kind" or "Crooked Teeth" quietly.

My Ipod is also a way of proving that although I am half-way to being an old lady I am pretty cool when it comes to music. I MAY have impressed my 16-year old niece with my knowledge of Portland rock band trivia - how many 47-year olds have the Shins, the Decemberists, Pink Martini and Modest Mouse on their Ipods AND knows someone who knows someone who is related to the lead singer of the Dandy Wharhols?

So maybe I am hastening my need for a hearing aide - sigh. Technology is on my side. Each year that goes by hearing aides get better and smaller, which I can justify as a safety net. Plus, unlike smoking cigarettes or not wearing a seat belt, my Ipod habits won't hurt anyone but myself. I guess I'm just a crazy risk-taker - whoo hoo - and my Ipod is here to stay. Do the shuffle!!!