by Mary E. Ulrich | Aug 23, 2010
Signing Your Life Away–literally.
I couldn't make this up
RELEASE OF RESPONSIBILITY FOR LEAVE OF ABSENCE:
I, the undersigned, herby (sic) accept responsibility for …………………….while away from …………………… and absolve the management of said facility, its personnel and the attending physician of responsibility for a deterioration in condition, or accident that may happen while the resident is away.
For those of you who can’t believe this institutional baggage could still be around in 2010, you probably also can’t believe that “herby” has been faithfully photocopied and misspelled for all those years.
So me and “herby” are going to make a change. Starting today, I WILL NO LONGER SIGN THIS FORM.
Over the years I’ve gone from being mad, to sad, to frustrated, but now I think it is best to think comedy. (Say this in your best whiny Kathy Griffin’s voice and imagine a monologue from the queen of dish.)
“Actually to be on the agency’s ‘D’ list would be a step up. So, what the heck? It’s been at least 4 days since the supervisor decided I’m no longer public enemy number one–the queen of mean, so I should have enough social collateral to take this on, right?”
No matter how much the staff people beg that they are just doing their job and they will get in trouble if the form isn’t signed, I’m just not going to do it!
Now before anyone starts cheering please remember that in the ten years Aaron’s been in this residential and day program, he has regressed and there has been significant deterioration in his condition and skills. Yea, it’s documented. Remember all those accursed meetings?
But rather than blaming the loss on the parents and adding more passive aggressive guilt, let’s consider that maybe, just maybe, the ‘deterioration’ happens the 6 days a week when Aaron is in THEIR “professional” care.
And just what is “deterioration” anyway? It sounds like a remodeling job gone bad. Is that like when the concrete foundation starts to flake and fall apart? Do people actually deteriorate? Is that what all the plastic surgery is about? Face lifts, tummy tucks…worry that the concrete foundation is crumbling? Dr. Deterioration to the rescue?…”
Now Kathy Griffin would continue this comedy skit with some great anecdotes and have us all laughing. I can think of a staff person who said they didn’t have to brush Aaron’s teeth twice a day because “he didn’t brush his teeth twice a day.” Another staff person complained, “Why would I waste money and wash his hair everyday with shampoo. I only use shampoo once a week?” Or, “black socks are hotter than white socks, so you wear black socks only in winter.” (Actually this last one was in a day program and when I said there could be white wool socks, or black cotton socks–the color was not the issue–the staff person didn’t understand what I was saying.) Yes, indeed these could be great skits.
I’ve complained over the years about the wording on this form but the poor direct care staff in the house have no idea where the form came from, it has just always been there. They are caring people who have often had their own hard luck. They are making a little more than minimum wage. Some people might give them a nod and tell them they are doing God’s work, but society does not value the job they do.
So… drum roll… what to do? Probably the hundred or so family members who are signing this form are concentrating on the task at hand, giving their loved one a nice experience. It’s JUST A FORM. Life is all about choosing priorities. Choosing your battles. Is this worth an all out assault? Will haggling the company about this form make Aaron’s life better? Will it make my life better? I’ve put up with it for 10 years because I didn’t think so.
But the issue is, none of these “professionals” even knows how hateful and insulting this language is to families. They never put themselves in the families’ position; see it from their point of view. The fact when I was interviewing agencies, the first words out of their mouths were, “Oh, we love to have the family involved.”
And then after time, it becomes very clear that what they really meant to say was, “Oh, we love to have the family involved. We expect you to lavish us with praise and money, but then trust us unconditionally and ask no questions.”
Every good comic act and story needs a twist. So….what would Kathy Griffin do?
Maybe the solution is that next week I bring in MY OWN FORM. Before I give Aaron over to their care, I tell them THEY have to sign the form. They have to take responsibility for any regression and deterioration in Aaron’s condition.
Perhaps if the company had to own up to the undertrained, underpaid, undervalued staff. Perhaps, perhaps, perhaps…. Hell, they’d never sign it.
Take the stage–Passing the Mic
Do any of you have any great one liners you could add to our comedy routine? Have any of you had similar experiences? What kinds of forms do you sign to check your child in and out of their homes?
Share your ideas and keep climbing, onward and upward…
All the best,
Mary, herby and Kathy
Catch the followup to what happened click here
by Mary E. Ulrich | Aug 10, 2010
My blog is now three weeks old. I’m still trying to maneuver through the learning curves, but I’ve been so pleased to meet some new friends.
Joe Trey just sent me this video. Joshua Littman, who has the label of Asperger’s syndrome, interviews his mom, Sarah. It has a terrific message and graphics and is part of Story Corps. I’ve never met Sarah but I love her when she says, “I’m so lucky to have you for my son.” Check it out and let me know what you think. http://www.wimp.com/boyinterviews/ (chick here)
If you like this video, I recommend “There’s a Boy in Here.” by Judy and Sean Barron, 1972. Avon Books: New York. The book goes back and forth telling Judy (the mom) and Sean (the son) stories from their point of view.
I thought Sean’s insights about his way of looking at the world were very helpful. For instance Sean loved his teacher. Then one day she made the mistake of telling him it was her birthday and she was turning 24. Well, Sean hated the number 24 because bus number 24 was always late and he hated to be late. So–according to Sean’s logic, he could no longer like his teacher because according to the rules he made to make sense of the world–she was 24. Of course, the mom and teacher went nuts trying to figure out why Sean no longer treated his teacher the same.
Plus, Judy and Sean’s story starts out in Ohio and Sean “emerges from autism” and has a girlfriend and …. read it!
How many of us have rules that make sense to us, but not to others?
Have you seen any videos or read any books about people who are different? Share them with us in the comments.
by Mary E. Ulrich | Jul 25, 2010
photo credit: Squeek
The Americans with Disabilities Act (ADA) was passed July 26, 1990. This is an update from the 20th anniversary post.
First Hand Discrimination is a Shock
Around 1985 our family was on a thousand mile camping trip to visit my sister in Phoenix, AZ. Aaron was about 10 years old, Tommy 8. That morning we packed up our tent and stopped about 10 AM in a Big Boy type restaurant in Flagstaff. We purposely chose a later time to miss the rush. We had eaten at similar restaurants each day of our trip.
We were sitting in a corner booth watching cars go by. Aaron was acting great, just eating his eggs and pancakes.
When the manager came up to the table we just smiled and expected him to ask if everything was okay. Instead, we got the shock of our lives. We were being asked, no told, we had to leave that minute. He would escort us out (after we paid our bill.) Couldn’t even finish our orange juice.
It seems someone complained they didn’t like the way Aaron looked. Not that Aaron was having a tantrum, or throwing things or … just didn’t like the way he looked. When I asked to be able to speak to that person we were told “NO, now get out. We don’t want your kind in our restaurant.” Me, being the great advocate I am, I just burst into tears, grabbed Aaron and ran to our car.
25 years later, I can still feel the pain and stigma of that experience as if I were living it right this minute. It was a transformational experience because it beat the fact in my head that we were not a normal family. Today that would not happen and the difference is ADA.
July 26, 2010 marks the 20th Anniversary of ADA: The Americans with Disabilities Act. The Declaration of Independence may have taken place in 1776 for white male property owners, the civil rights of women and people of color happened in the 1960s, but many people with disabilities, their families and friends think of the 1990 ADA as our civil rights act.
The international symbols were a welcome relief.
Accessibility is for everyone
There has been tremendous progress in the last 20 years to change attitudes, fight discrimination and give people some opportunities in jobs, education, technology, and communications… a whole lot more than just curb cuts and handicapped parking places. But there is so much more to do.
In a later post, I will talk more about accessible websites. I’m trying to find more information on the official “Bobby Approved” (think English Bobby–police officer) which rates websites for being friendly to people with disabilities. There is a little blue police icon in the corner of many websites–well, maybe not many–but at least some.
ADA.Gov Official Website
If you have a couple minutes check out the official website of ADA.
http://www.ada.gov/ Information and Technical Assistance for the Americans with Disabilities Act/a>
Recommended Historic Films
http://www.ada.gov/videogallery.htm#anchor%20ADAsigning990
There are five films: ADA Signing Ceremony, My Country, Ten Employment Myths, Ten Small Business Mistakes, Police Response to Disabilities
Synopsis of ADA Signing Ceremony
This video documents the speech given by President George H. W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990. In the video, President Bush speaks to a huge audience of activists, Congressional supporters, people with disabilities, and their families and friends gathered on the south lawn of the White House.
The 22-minute film, provided to the Department by the George Bush Presidential Library, is being re-released on the Internet to increase awareness of the ADA.
Synopsis of My Country
“My Country”
In this one-hour documentary, symphony conductor James DePreist, who contracted polio as a young man, profiles three people with disabilities whose lives have been shaped by the struggle for equal rights. Mr. DePreist is the nephew of African American contralto Marian Anderson, who in 1939 was prevented from singing at Constitution Hall. He draws parallels between racial barriers and the barriers faced by people with disabilities.
ADA Timeline
Our friends at the MN Governor’s DD Planning Council have this awesome resource on the timeline of ADA. http://www.mnddc.org/news/newsitems/ada_20th_anniversary_timeline.htm
2011 Update
Ohio Legal Rights released this press release about the 21st anniversary of ADA.
We still have much to do and with the budget cutbacks threatening basic services for people with disabilities, this is a time of great stress.
Keep Climbing: Onward and Upward
All my best,
Mary
Comments:
Do you have any stories to share in the comments? I know many people think the government is too large and there are too many laws. What are your experiences with ADA? What do you think is the role that government should play to protect the civil rights of vulnerable people?
by Mary E. Ulrich | Jul 22, 2010
photo credit: wallyg
Is Anybody There? Does Anybody Care?
Each of us has transformational moments in our lives.
One of mine was watching the musical 1776. In one scene the night before the vote on independency, John Adams reads a letter from George Washington and using his words, sings about “commitment.”
These founding fathers used words and actions to create a form of government that never existed before. They were visionaries, they were leaders. Seth Godin would say they were Linchpins, they shipped.
Americans with Disabilities Act (ADA) is 20 years old July 26, 2010
Since Aaron was born, in my small way, I have taken a stand for the civil rights of people with severe disabilities.
With ADA they now have a chance at the American Dream of our forefathers. The dream is not a promise, it is still only a dream for most of us, but there is the possibility–the hope.
Dedicated parents and professionals of people with disabilities answered the call: “Is anybody there? Does anybody care? Does anybody see what I see?” Their work and sacrifice have made it possible for Aaron and others to grow up with their parents and families; go to school with their brothers, sisters and neighbors; and learn skills that will help them after they graduate for the 40, 50, 60 years of the rest of their lives.
Thanks to the Americans with Disabilities Act (ADA) they can live in the community of their choice; and with luck have people who will care about them.
Individuals with Disabilities Education Act (IDEA) 1975
In 1975 when we were first learning of Aaron’s intellectual disability, an inclusive life was just the dream of a few parents and professionals. Now, in 2010 we have better attitudes, laws, research and information. We have made tremendous progress, at least for school-age kids. But like other civil rights movements we do not have all the answers, we have not reached the top of the mountain–especially when it comes to the lives of adults with disabilities.
I was interviewed last week by a university student who was taking a class on people with exceptionalities. His assignment was to interview a parent who had lived during the early days of IDEA and compare “inclusion” with the “continuum of services.”
We talked about the Disability Civil Rights Movement, we talked about the definition of inclusion and how some professionals have bastardized the word, we talked about taking a personal stand and making a commitment.
As I prepared for the interview, it felt good to go through my files and pull the documentation of what we have accomplished in the past 30 years.
See (Parallels in Time if you are interested in a history) on the other hand, it was shocking that inclusion is still a controversial issue.
I know old paradigms die hard, but it is more than that.
There are some people who will never give up their segregated and “special” attitudes and values. Some people who will forever fight for keeping the status quo and the charity model. And, it is no secret that No Child Left Behind–left our children behind.
In future blog posts I will talk about this journey, but for now I am just going to say there is a resource page that will have some contact information.
Keep Climbing: Onward and Upward
All my best,
Mary
In the comments: What do you think? Is anybody there? Does anybody care?
