Posts Tagged ‘systems change’

Crossing the “yet”

Ed Roberts was an amazing guy. We were both on the TASH board and I got to spend some time with he and his son (pictured). Click on his name and see his incredible accomplishments. Ed was into action, not words. He was asked to be one of President George Bush’s “1000 points of light,” which he declined calling it Bush’s “1000 points of hype.” When he died, his wheelchair was donated to the Smithsonian. One of Ed’s quotes was:

There are only two kinds of people in the world: the disabled, and the yet-to-be-disabled.

This past year, my husband has had some heart issues and I’ve struggled with sciatica. Because my back pain’s not going away (even though I’ve had the lumbar shots, physical therapy…) we decided we needed to move to a ranch house.

And true to Ed Roberts’ prediction, I have crossed over the “yet” and am now starting to see the world from the “disabled” point of view.

Of course I’ve always seen what worked and didn’t work for Aaron, my son with a severe disability. But even with that knowledge and experience, now it is more personal. It is me. And it is shocking.

Boomers and Housing “thought leaders”

First of all, the housing market is filled with two stories; split, tri and quad levels but few ranches. The ranches that are available were built in the 60s. So they have old plumbing, bathrooms the size of postage stamps, and some even have steps. Yep, steps to get to the one-floor plan.

As we boomers age there is a scarcity of accessible housing. Sure there are some new patio homes but they are pricey and often in “mature” neighborhoods. Sure there are condos and apartments with elevators in crowded senior high-rises. Sure there are retirement communities which are basically segregated facilities–beautiful, but still segregated. Isn’t that what we have been fighting against for the last 30 years?

So, what to do?

Next week my husband and I are putting our multi-level condo up for sale. We figure in this market, it is wise to sell first and then buy. But as we go through potential houses, we are not finding anything appropriate. Where is the diversity? Where are the neighborhoods where ranches are mixed with multi-level houses? Where are the neighborhoods where seniors and young families can live together?

Universal Design

Universal Design has been around for a long time, where are the houses built with this concept? Why have the builders not used state-of-the-art thinking and technology?

I wish Ed were still here to make a joke and put things in perspective. I wish Ed were here to share his wisdom and spirit. Fact is, I just plain wish Ed were here.

And once again, I am reminded of my own aging and mortality. And that is another shock.

I never used to have friends who were dead.

In some ways I am lucky, I don’t carry many of the fears and superstitions of the previous generationI know about the difference between having a disability and a handicap (see post). I know how to advocate for my needs.

As I think about my own passage into the world of disability, I feel more prepared. People with severe disabilities have led the way. They have taught us to strip away all the frills and find the core of what we need. They have helped us learn about interdependence, adaptations and accommodations, systems of support, circles of friends, partial participation and community involvement.

They have taught us what is important–to be surrounded with people who love and care about us.

So, Tom and I will figure it all out. We will use the advocacy and problem-solving skills Aaron and others have taught us.

I remember when one of our relatives had a stroke. He would complain verbally and non-verbally, “I’ve only been like this for a short time” (I used to be independent and able to walk.) He would explain to everyone who would listen, “I didn’t use to be handicapped. I was an engineer.” (I had worth.) “Aaron is too close he might step on my foot.” (I’m damaged now, but I’m not like him, once I was whole.) He did not want to be near Aaron. He never put his prejudices into an actual discussion, he just always had this attitude about people with disabilities–and by god, he wasn’t one of “them.”

We have worked so hard to change people’s attitudes about people with disabilities. The next generation of children has had personal experiences with people with disabilities in the schools and community. But maybe the bigger lesson is that learning to be more tolerant about others, will make it easier for us to be more tolerant of ourselves. Hopefully, part of our learning about differences will ease the process of getting older.

We are all the same on the inside. We all need to be loved, safe, happy and give to others. That doesn’t depend on what our outer body looks like. That doesn’t depend on what side of the “yet” we are on.

I think these lessons will serve me well.

ps. Anyone looking for a great condo?

Please share your thoughts in the comments.

Are you offended with Ed’s quote, “There are only two kinds of people in the world: the disabled and the yet-to-be-disabled.” Do you think this discussion will help us as we age?

Keep Climbing–Onward and Upward

All the best,

Mary

Advocacy in Motion:

Last weekend was the turning point. Hey, I’m an experienced advocate, I’m even a graduate of Question the Rules. Sometimes, enough is enough, you just can’t take it any more and must take action.

Herby, Me and Kathy Griffin outlined the issues in a previous post called Signing Your Life Away. Click here for the story Signing Your Life Away.

Well, Saturday night I raised the challenge and refused to sign.

The staff person handed me a pen and the paper and was shocked I wouldn’t comply. She became insistent and said, “But you have to sign, we have to file this paper.” So I wrote her a note on a scratch paper and I’m sure she thought I was being a smartass. (Maybe I was.) I read her the words, “responsible for deterioration in condition” but I don’t think she was even listening to why those words were offensive. She was just upset I wouldn’t sign the “official” paper and now she would have extra work to do. I could almost here her thinking, “Why on my shift?”

I thought about it all day Sunday, my husband wisely told me to choose my battles, this was a small thing. I told him Rosa Parks refusing to give up her seat was also a small thing. Of course, then he told me I was being over dramatic (I was) but… I decided this was so small, it was a battle we could win.

When we brought Aaron back on Sunday night, I thought it might console the staff person if I made up a formal release form with the same format as the first paper, just omitted the offensive words. Then she would have a paper to file. She finally said I should call the supervisor, it wasn’t her issue. (Which was true.)

I spoke to the supervisor on Monday and he reaffirmed how important that paper was. All of a sudden this paper was saying all kinds of things it didn’t say: the parents would be giving the medications, take the person to emergency care if necessary…. When he finished I explained I had no problem signing a paper saying I would take responsibility for Aaron and make sure he got good care, but I would not sign a paper saying I was responsible for his “deterioration in condition”. (Geez, I get upset just typing that phrase.)

He couldn’t understand why I wouldn’t sign it when I have signed it all these years (good point). I told him every time I signed it, it was a dagger to my heart.

I explained we were Aaron’s guardian and of course we could give him emergency care. And besides that was not what the language said on the paper. He told me to go up the food chain and call the person in charge of Human Resources.

I really do hate being a trouble maker. I want everyone to like me, and particularly I am always afraid they will take my bad behavior out on Aaron. But sometimes you just have to do what you have to do.

The person from Human Resources called just now, she was appalled when I read the wording on the paper. She reiterated what the supervisor said the paper was supposed to say. And she said she would fix it.

Period. Done (I think). Job done. Amen. Alleluia! One small step for man…

Next week when we again pick up Aaron, I fully expect a new form to be in place. And just maybe, “herby” will be gone and replaced with “hereby”. Goodbye herby.

I’ll let you know. But I think this was one small victory for the good guys! And like Bronfenbrenner says, everything is connected. See post here. Perhaps this will trigger other positive changes.

Call to Action:

What small act can you do today to advocate for someone you care about? Share your success/ challenges in the comments below. Maybe our community can help. We have some world-class advocates here. Let’s make a difference.

Keep Climbing–onward and upward.

All the best,

Mary