The View From the Bottom of the Shaft

In her Hump Day HMMM, Julie Pippert tells the story of Lakshmi, a little girl born in 2005 in India with four arms and legs, who was revered in her village as the reincarnation of the goddess Lakshmi. The condition was caused by a parasitic twin, which she eventually had surgery to remove.
This brings up all kinds of things for me as a disabled person. How much do we fix? When? Many Deaf parents who have deaf children won’t let them have cochlear implants, wanting to bring them up in Deaf culture instead. I am fine with that. They have a culture that will care for them. On the other hand, many hearing parents with a deaf child will go the cochlear implant route, and will enroll them in schools that emphasize oral skills to the detriment of sign language and Deaf culture. Are they doing their children any favors? I don’t think so. It seems like many of them do it because they are too lazy to learn to communicate with their deaf child in the child’s own language.

I’m a disability rights activist, but I disagree with some of my compatriots. The ones who think people like Terri Schiavo should determine their own course. As if they could. The ones who object to the parents of severely developmentally disabled girls having them have hysterectomies. I agree with the parents, the child having a uterus and periods serves no purpose. People who can’t speak for themselves, like Terri Schiavo and Ashley need someone to speak for them. And sometimes we have to ask what is best for society as well as for the disabled. Now, I’m not advocating the Nazi approach, but parents and partners should have the main say in the care of their loved ones. Not a bunch of so-called disability rights activists.

There is a lot of controversy in the disabled rights community about whether treatments, such as were done to Ashley to limit her growth and make her easier to care for are ethical. Particularly against the treatment was Not Dead Yet, a disability rights group that opposes assisted suicide and the removal of feeding tubes etc. from persons in a persistent vegatative state, and the Feminist Response in Disability Activism. FRIDA objects to the “desexualization” of the operation on Ashley.

I am on both sides of this issue. I am a disabled woman. In my life previously I have cared for people who are in persistent vegatative states and are severly developmentally disabled. I know what resources it takes to  care for these people. While I agree with the critics that these things become necessary because we don’t put enough into the care of these people, I also see that there are people with more potential out there suffering while these people are cared for in whatever minimal way we care for them. It is a shame in our nation that 12 year old boys die of tooth decay.

I guess I just feel that everyone should have what dignity they can. There is no dignity in having a twin growing out of your bottom. There is no dignity lying in a bed for years being tube fed, and changed like a baby. There is no dignity in a young girl going through precocious adolescence, and growing breasts and having periods long before she should even if she was normal.

I guess I also feel we should put our money where it can do the most good. With all due respect to the parents of the developmentally disabled who fought valiently for their education, it is insane to send a severely developmentally disabled person to “school” until they are twenty-one  when they don’t even have the ability to learn to turn over by themselves. It would be better to spend the money on gifted and talented programs.

What about me? What if someone decided that I was redundant? I may be someday. I have made up my mind that children are more important than I am. But as long as I can answer for myself it is my choice, when I can’t I hope my loved ones will do what is right for me and the world.

Working Like Dogs: The Service Dog Guidebook by Marcie Davis

My review

rating: 2 of 5 stars
If you are physically disabled, and if you are going to get a service dog from an agency, then perhaps this book is for you. However, there are other ways to get service dogs, including training them yourself, and there are other types of disabilities that service dogs are used for.

The authors are very physical-disability centric, and in the introduction seem to put down psychiatric service dogs as not “real” service dogs. I beg to differ. I couldn’t go out without my service dog any more than Marcie Davis could go out without hers. I panic in crowds, I need the dog with me. The dog calms me. I have taught her some service dog tasks, not particularly because I need her to do them as that they will qualify her to be a “real” service dog in some people’s eyes.

Much of the book is spent not on training, or application process, but on the retirement, illness and death of a service dog. My dog is ten years old now, and I’m having to think about replacing her. And it’s sad.

I was very lucky when I got her. She was trained by me, but had a good temperament for the work in the first place. I know what I want in my next dog.

What is really needed is a book on how to select and train a dog to be a service dog. Not everybody can afford the fees that the agencies charge, or to travel to distant places to pick up a dog and train with it. Nor can some people wait the years on most agencies waiting lists. That’s why owner training is necessary for some people. It just could have been a more comprehensive book if the authors had looked outside their own experience.

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When you are dependent on a mobility device, whether it is a walker or scooter or wheelchair, getting into places is a major concern. The ADA has helped in that regard, but often the letter of the law is fulfilled but not the spirit. Yeah, it’s accessible, sort of. Thanks a bunch people. Do you want my business or not?

Recently  we had a supermarket open in downtown Seattle, in the basement of one of the buildings. This is an exciting developement, but previously if you lived downtown, and a lot of people do, you had to go to Lower Queen Anne or Capitol Hill or First Hill to find a supermarket. But it was in the basement, so was it accessible?

Lift at Kress Grocery

Well, the answer is yes and no. There is a lift and you can use it by yourself, sort of.  The picture to the left is the lift upstairs. The door open automatically, but not conviently. For instance, the lift was downstairs when I wanted it. I found the button to bring it up over on the wall to the right of the lift. When the door to the lift is open you can’t get around it to get into the lift. So you have to quickly push the button to open the door, and then get around it to  get into the lift. It’s a race unless you have somebody else there to push the button for you. And you have to keep contact with the button while you are bringing the lift up.

Once you get into the lift you will find it claustrophobic. It is just barely long enough  and wide enough for my scooter. I had to take my backpack off the scooter to where the door would close and we could go down. Friday was definitely crowded and didn’t care for it one

Obstacle course at Kress Grocery

little bit.

Once you get downstairs you are confronted with an obstacle course. You have to back out into a narrow hall, turn a little and go down a corridor. At the end of the corridor, you are confronted with the view to the right. Yes, you’re right, they store the shopping carts right in front of the corridor to the lift. The scooter fitted through the space, but I wouldn’t want to try it with a really wide wheelchair. For that matter, a wide wheelchair wouldn’t fit in the lift.

The store itself is nice, if small, but is obviously more for city dwellers who don’t cook much. Lots of stuff in the deli, and stuff you can just throw in the oven, but not a lot of ingredients. If you want those things, you

The inside of the lift

will need to go to Capitol Hill or Lower Queen Anne.

So, the rating for accessibility on my scale is C-. This means the letter of the law is followed, but the accessibility is either a pain in tush and/or requires the help of another person. For myself, if I can’t do it myself I consider it less accessible than if I can do it myself.  I hate trying to get into a place that has the accessible entrance marked, but if you are in a scooter or wheelchair you have to have somebody else open the door for you to get in.

In addition I marked the store down for accessibility because I think low vision or blind people would have difficult with the escalator, and also there are no instructions for operating the lift. Things could be better, but they could be worse. For me it is as close to go to Lower Queen Anne where the stores are more accessible than this place, and have more of what I want. Sorry, Kress Grocery, I hope you make it where you are for other people, but I don’t think you are for me.