I was not a rebel in the ’60s,when many of my generation were. I was raised in such a conservative community that civil disobedience never occurred to me. And I saw the acts of others as practically sinful. Because the government knows best, right? It wasn’t until I was in my forties that I began to see that government, and other institutions, were flawed. As all human enterprise is flawed. And it’s only now, when I’m not working sixty hours a week, that I can rebel.
I have had some minor, peripheral involvement with Occupy Seattle. The people sleeping in the park won’t claim me, I’m sure. I’m not about to join them. I’m too old for that stuff. But we also serve who sit and type. Right now I am trying to make myself useful in the Internet and Media Workgroup. I am, however, apparently a slacktivist, and I didn’t get to the meeting today. I didn’t go yesterday, in the middle of a downpour, because I didn’t enjoy sitting in the rain in a meeting the day before. I wouldn’t want to get arrested for using an umbrella sitting down.

The Boyo has been an activist from way back, for about 30 years or so. He is, of course, much more active in the movement. He has spoken a couple of times at the General Assembly.  I live vicariously through him. And the internet. I can watch the GA meetings on livestream. Of course, my vote doesn’t count, but somebody has to tend the home fires.

Right now, there is a lot of mumbling on the internet that the movement is leaderless. People don’t know that is intentional. It is a democratic movement run by consensus. Besides, if you want to kill a snake, you cut off its head. That’s what they tried to do by assassinating Martin Luther King, Jr. Presenting the head of Medusa makes it harder to kill the movement.

Today at the park, I saw a lot more people of color. I was glad to see this, as much of the Occupy Wall Street movement seemed to be comprised of white, middle class people. I’m not denying they have problems, a lot of them, but if we are going to be the 99%, we need to be inclusive. Neither color, nor income, or lack thereof, can exclude you from the 99%, only income and attitude can do that. Like the 53%ers, who think they are not part of the 99%, because they are working three jobs, and so should all those slackers out there. I hate to tell them, I’m old enough to remember when you could get by on one job in America, even a minimum wage one. And a lot of those “slackers” would love to have a minimum wage job, but you’ve got three of them. Jobs, like oil, are a finite resource.

I am not happy with what is going on in Seattle. The mayor has offered us City Hall to camp at, but a certain small, vociferous minority are insisting the Occupation stay at Westlake Park. Sure, they are more visible there than they would be at City Hall, but sometimes discretion is the better part of valor. If you get pneumonia, or hypothermia in Westlake because you can’t use a tent, or even a tarp, then I guess you’re a martyr, but what have you really accomplished? If you’re arrested for staying in the park, what have you accomplished? The police have been brutal without provocation in Boston and New York, so why instigate arrests? They police took down one small tent tonight, yet the people are calling for reoccupying the park with lots of tents on Saturday. Sigh!

Things go on. I don’t know how this will all turn out. And I think this is turning out to be two separate issues. And right now, the Occupation of Westlake is getting all the attention, while there are a lot of other issues  to work on . I think I will work on the other issues and stay out of the park.

 

You see the ads for the various scooter and power wheelchair places. They’ll help anybody get a scooter, right? Well, yes, if you have the money. Otherwise, unless you can meet Medicare’s stringent rules you are out of luck. So what are those rules?

How to Know if You Qualify for a Power Wheelchair or Scooter
You must meet all of these conditions to qualify for a power wheelchair or scooter:

  • •You have a health condition where you need help with activities of daily living like bathing, dressing, getting in or out of the bed or chair, moving around, and using the bathroom.
  • •You are unable to operate a manual wheelchair.
  • •You are able to safely operate the controls of the power wheelchair or scooter.
  • •You have had a face-to-face exam and received an order for the equipment fromthe doctor or practitioner who is treating you.
  • •You must be able to safely use the power wheelchair or scooter in your home.
  • •You have interest in using a power wheelchair or scooter

.You must also meet the conditions below to qualify for a scooter:

  • •You must be willing to use a scooter.
  • •You must meet the weight capacity of the scooter.
  • •You must have good vision.
  • •You must be mentally able to safely use a scooter.
  • •You must be able to safely get on and off of a scooter.

Remember, you must have a medical need for Medicare to cover a power wheelchair or scooter. Medicare won’t cover this equipment if it will be used mainly for leisure or recreational activities, or if it’s only needed to move around outside your home.

So basically what this boils down to is that you have to need a lot of help to qualify for a power wheelchair or scooter. You must need it inside your home. However, this doesn’t specify if that means inside your tiny 600 sq. ft. apartment, or does it mean you can’t get to the lobby for your mail without it.

OK, I can bathe, dress, transfer and toilet myself. I can walk around my apartment. I can even walk a couple of blocks. What I can’t do is go to the grocery store without a scooter. I can go to the library, but it is painful. I can’t go to a park. I can’t go anywhere I have to do much walking. I have conditions with my arms that would make a manual wheelchair painful for me. So basically, without a scooter, I am stuck at home most of the time. This is a set-up for depression. And I’m already a chronic depressive that needs three antidepressants daily to get out of bed.

I am not the only one to point this out. In 2004, the Center for Medicare Rights issued a paper (pdf) pointing out that the “in the home” rules Medicare applied were 40 years old, and no longer matched the law regarding disability rights. They also point out, as I have, that not being able to participate in community activities can lead to secondary health concerns, such as falls or depression. Certainly, confining durable medical equipment to what is needed in the home does not meet the letter or the spirit of the Americans with Disabilities Act. It’s been four years, and still we have these restrictive and repressive rules.

So what can I do? I can ask for a chore person to help with housework and groceries. Unless the person is a volunteer, I am costing more per year than a scooter would cost. This is a stupid waste of money. So is the increased antidepressants and therapy I will need to cope with being stuck indoors a lot of the time.

Also, these guidelines don’t make sense. I have to need help with ADL’s and still be able to safely get on and off the scooter? If I need help to bathe, dress, get in or out of bed or chair, moving around and using the bathroom, how can I get safely off and on a scooter? Or by help, do they mean I need to use a walker to get in and out of chairs, or a mobility dog? WTF? I don’t know.

So right now, with my scooter which my father bought me broken, I feel like I am imprisoned. Places in the neighborhood that I could get to easily on my scooter, like the grocery store, are out of reach. The grocery store I go to is down a steep hill, dangerous in a manual wheelchair. Or I can go the long way, around the block, and down a not so steep hill. *sigh* Or I can go shopping at the more expensive stores. And I don’t have food stamps, I make too much money. It’s a conundrum.

I am not the only one for whom this imprisonment is a problem. Many disabled people who require home care are then not even able to go to lunch with friends (8) for fear of losing their home care benefits. If they lose them, they end up in nursing homes, at a much greater cost. These interpretations were ruled improper by the courts in 1998 (9), so why are we still fighting this battle ten years later? It was only in 2000 that the restrictions were loosened enough to allow the “homebound” to attend religious services.

One advocate for the disabled contends that CMS, the Center for Medicare and Medicaid Services, willfully misinterprets the rules in order to keep costs down. (7) I think this is correct. Why else require people to stay at home, or so narrowly interpret the rules as to keep people confined in their homes, and not provide them with services that could keep them out of nursing homes, or enhance their ability to interact with a community, an important part of preventing depression in any group. Especially the disabled. Efforts made in 2003 to change the homebound rule to one which stated that it took “considerable and taxing effort” to leave home have apparently come to naught. The standard should not  be whether the patient can leave the house, but rather whether it would cost more to confine them to a nursing home. It almost inevitably would.

Bibliography

  1. Latest Medicare Wheelchair Proposal: Friend or Foe
  2. Medicare Rules Targeting Fraud Hit the Severely Disabled
  3. Protecting Medicare’s Power Wheelchair and Scooter Benefit
  4. Forcing Isolation is Another Word for Abuse of the Disabled
  5. Bush Administration Falls Short on Medicare Homebound Rule
  6. Medicare’s Wheelchair Policy ‘Imprisons’ The Disabled-Study
  7. Discrimination Against Wheelchair Users Imprisons Them in Their Homes
  8. Hostages of Home Care
  9. Home-Care Denial in Medicare Cases is Ruled Improper
  10. Medicare Homebound Rules Update-2002

I posted over at Silverstar’s Magical Adventures about the Pseudo-inspection, but it makes me wonder what is going on? Not only did I get this notice of inspection that apparently wasn’t meant for me, but today when I took Friday out for her constitutional the Jesus Lady was outside wearing a homemade sandwich board alleging unfairness in the handling of residents by the Seattle Housing Authority. I stopped and had a long chat with her.

I call her the Jesus Lady because she puts on a prayer luncheon every month, wears a WWJD lanyard, and has a hat that says Jesus Love You. She runs clothing drives for the homeless, and does other good works. Every resident gets a Christmas card from her. She is a good-hearted soul, and apparently people bring their troubles to her.

The story I got from her was that some residents had been served ten day eviction notices apparently for cursing during one of the meetings we’ve had lately. I’m sorry, did someone say they didn’t like the fucking way things had been run? Oh, get over it.

I don’t know where this is coming from, I didn’t get a lot of specifics. Jesus Lady rightly said it wasn’t her story to tell. So I will tell here some things I see going on.

We were supposed to have our windows replaced this month. They are old, badly installed, and leak like a sieve. Which reminds me, I need to have maintenance come and caulk in the corner between the window and the wall, as even though I applied plastic over my window last winter, I still had a draft and needed many layers and a  quilted throw to sit in my chair and read or watch TV last  winter.

Well, the deal for the windows fell through for some reason. It’s fallen through every time they say they are going to do it, three times in the last five years. Meanwhile, not only do we freeze, our energy bills are sky high because we are heating the great outdoors. Not everybody knows about the plastic for the windows, can get to the hardware store to get it, or has a friend who will help apply it. Or can afford it. Personally, I think SHA should apply it for those who want it. What are they doing with all the money that gets appropriated for the windows we never get?

Anyway, during the meetings for the never appearing window replacements, the residents were told that we would be moved to a hotel for three days during replacement. This building was built in 1978, I am sure it is for asbestos abatement purposes that we are being moved. However, we were told we couldn’t come near our apartments while they were being worked on.

This upset some people. We are poor, all of us. Some of us have gotten everything we own from the free pile downstairs. Some people, like me, have a great deal of computer equipment or other nice things we bought with our crazy money. We are worried about our belongings.

Add to that the fact that in any building full of disabled people, there are bound to be a couple of paranoid schizophrenics. Tempers flared. Did this cause the discombobulation of certain residents, as has been alleged? Or is something else at play.

Now we come to the psuedo-inspection. Imagine how discombobulated you would be if you received notice that you were going to be inspected. Then they didn’t show up on the appointed day. Then they did show up the next Monday. This could be discombobulating to normal people, much less folks who may have problems with anxiety, depression, and paranoia. So were the notices that I received delivered to the wrong floor accidently, or on purpose? Either way, it’s either malicious or incompetent.

Recently, I had a run-in with a pay-or-vacate notice. When I got it, the letter that accompanied it was not addressed to me, but to someone else. That pissed me off, I don’t need other people knowing my business. Unless I tell them. I was assured that the other party was in the hospital, and didn’t get my letter. But I’m still pissed. And I’m pissed that I was charged $33 this month because they couldn’t find my automatically sent payment, and called it late. Bastards.

There may be racism involved. Not the way you would expect, however. Our big boss manager is black, at least one of the targeted residents is white. And being of the Caucasion persuasion myself… Oh, wait, paranoia is not one of my diagnoses.

I wanted to take a picture of the Jesus Lady’s sign. She wouldn’t let me. I told her I would blog about it. She said The Lord would take care of it. Reminds me of the story of the man on his rooftop in a flood. A raft floated by, but he knew God would save him. One of his neighbors in a boat came by, but he knew God would save him. A helicopter tried to pick him up, but he knew God would save him. Inevitably, he eventually drowned and was met at the pearly gates by Saint Peter. His first question is why God didn’t save him. To which Saint Peter replied, “We sent a raft, a boat and a helicopter. What were you waiting for?”

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.

The Service Dog Guidebook 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.

View all my reviews.

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

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

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

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.

Annie’s post the other day got me to thinking about mental illness as it is treated in this country. It can be summed up in two words. It sucks. And it has sucked for many years.
One of the problems that I can see is that we are still in the dark ages when it comes to mental illness. It is treated as some booga-booga witchcraft thing, to be shunned at every opportunity. It’s not. Most mental illness is brain illness, and most of it is chronic. Your mother had nothing to do with it, except for what genes she managed to pass on to you. Medications can help with a lot of it, so long as you can get the mentally ill to take their medications.
Insurance policies that differentiate between mental and physical illness are discriminatory. Would you limit diabetics to twenty shots of insulin a year? Why, then, limit mental illness to twenty visits a year? Many of the more severely mentally ill require almost constant follow-up. Without a lot of support services, they are the homeless you see on the streets of many urban areas. Most of them are not a danger to the public, most of them are a danger to themselves.
Back in the olden days, before 1975 in this country, most of the mentally ill were confined to mental hospitals permanently. By this time, drugs had been developed that controlled some mental illnesses, and a case came before the Supreme Court that opened the doors to the mental hospitals. In 1975, the Supreme Court ruled in O’Connor vs. Donaldson, that the state could not confine a mentally ill person who was not dangerous to themselves or others. In spite of the passage in 1963 or the Community Mental Health Act, many people at the time were still being confined, even when family was willing to take them in.
Unfortunately, with the advent of Reagonomics, many states took O’Connor vs. Donaldson as a budget-cutting gift from heaven. Many people were released from mental hospitals into other milieus. A lot of them ended up in nursing homes, and that is where I encountered them. In more recent years, the trend has been to move them into smaller group homes, or just let them wander the streets.
Nowadays people cannot be confined to institutions unless the present a danger to themselves or others. However, since the budget cuts, mental health beds are in short supply, and you have some ridiculous situations developing. I could tell you stories. Ok, I will tell you stories.
I used to dispatch for the police department in a very small town. We only had one line on our police phone. I started getting calls from a woman who contended that “they” were playing music through her refrigerator. Most of these calls came in the middle of the night, at 2 or 3 AM. And she would talk on and on, if you hung up on her she would call back. Unfortunately, she lived about ten feet out of town, which put her in the province of the sheriff’s department. They would come over to the house, I would complain about the woman, and they would tell me they couldn’t do anything because she wasn’t a danger to herself or others. And give me wonderful suggestions such as to tell her to put aluminum foil on her windows. I finally got them to do something when I pointed out that as long as she was tying up the police line, no one else could get through (this was long before the days of call waiting) and that if she called me again at 2 AM, I was going to kill her, making her a danger to herself. I’m not sure which argument worked, but she was soon picked up and taken to the mental hospital. Of course, the next time I saw her was at my day job as a nurse in a nursing home.
A woman who had relatives in town was brought to the police station by her relatives. She was speaking gibberish, had a long history of mental illness, and a history of suicide attempts via pills. She also had a purse full of pills, and prescriptions for more. The social worker who saw her, however, didn’t think she was a danger to herself. By some accident, she got transported to the mental hospital, where the workers there had a different view of the situation, and she was admitted. I guess my ex-husband just didn’t hear very well when told to take her to a half-way house. I will try not to go on and on about the stupidity of having social workers as the gateway into mental health treatment.
We admitted another resident to our nursing home who had jumped off a bridge in a suicide attempt, breaking both legs and one arm. As soon as she was mobile again, she proceeded to go to the town sewage plant, and walk into a sewage pond. She was observed by one of the townspeople, and was rescued and transported to the hospital. Later in the evening, the nursing home was informed she had been released and was on her way back. For some reason, they refused to take her. Like maybe we didn’t have the staff for a suicide watch?
Another resident, a diabetic, suddenly began to not eat or take his meds, and refuse to leave his room. The community mental health worker was summoned, and the resident convinced him that if he could go home for a visit, he would begin eating again. The next day he slit his antecubital arteries with a razor blade he had secreted in his wallet on his visit home. The only reason he didn’t die is that he took that moment, after barricading himself in his room for weeks, to walk outside, blood streaming from his arms.
We also had in the community a man who was bi-polar, and in his manic phases was violent. For some reason, he always sought out my ex-husband to beat up. Finally, my ex had enough, and told him the next time he was violent, he wouldn’t fight him, he’d just shoot him. A reasonable course since he was six inches taller and about 100 lbs heavier than my ex.
So you can see, the definitions of “danger to themselves or others” are very loose, and that due to the lack of beds, many
who need a bed are shunted into inappropriate placements. What’s the answer? I don’t know. But it is not the current system.