Sunday, September 30, 2007

New family members

In our house live Teddy and me. Teddy lives downstairs in his own apartment. Opal and Jack also live with us. They are 2 rabbits. They were supposed to live with Teddy, but I wasn't sure they were being kept clean- so they live upstairs with me.

Opal and Jack are supposed to be siblings. We got them from a rabbit rescue. Don't trust a rabbit rescue to know what they are talking about. Our twins were the same size when we brought them home. But Jack started to grow and grow and is now about 3 times the size as Opal. It turns out they are the same breed - just one is full-size and the other is dwarf.

Well now we have two more family members: 2 ringneck doves. I'm not sure their names might not change - but they are Irma and Flora at the moment. Named after my grandma and her sister. My son adored them both and think that the doves are from heaven.

So the doves are exploring the house and we are trying to figure out where in the house they will live- what they eat - etc. We are also wondering what the rabbits think of them and if they might turn out to be friends.

Update: they have been with us for less than 18 hours and we have eggs. I can only assume the eggs were made before they came to live with us and these are truly 2 girls.....but just like rabbit rescues can be wrong - so can dove owners.

Update: They are ignoring the egg. There is only 1 now.
Opal, our rabbit has died. Old age maybe. Shock from seeing the birds? Teddy is heartbroken. Jack seems sad. We introduced Irma to Jack. They didn't seem to mind each other. But Jack couldn't get in his cage fast enough when the introductions were complete.

Friday, September 28, 2007

Bad Mom

I know we all have our days and today I had mine. Teddy was going to a football game and was supposed to bring 2 bottles of Mt. Dew and 2 of Pepsi as his contribution.

I had been to the grocery store the night before on my own - and the big bottles were up high in a new contraption that I couldn't reach. So I just figured we would get them today. So we went to Kmart because Mt. Dew was on sale - but we went to a Kmart that had just one scooter and it was in use - so we kept going. I sent him into the Kroger's on his own with strict instructions as to what he was to buy.

So he came out with 2 Vernor's , 3 Pepsi, and 2 Mt. Dew. So I screamed and hollered about buying 4 not 7 and what was he doing. Couldn't he count to 4? Well he said he bought the 2 Vernor's for me because he knew I didn't feel well. Well I said I didn't ask you to buy that I said 4. Why did you buy the extra Pepsi. He said I wanted one.

Well I talk all this talk about a self-determined life for him - and he was very much thinking his own mind when he bought all this pop. SO why did I lose it?

Teddy knows.

One day a month the mother from hell appears. So, he just listened and ignored me. A few hours later I apologized and said I didn't feel good, but it was no excuse. He said it was OK and did I want some Vernor's? I said yes please - and after 15 minutes he appeared with warm chocolate chip cookies (thank goodness for premade cookies dough) and a big glass of cold Vernor's.

My sweet angel.

Sunday, September 16, 2007

Hanging on

My friend is still in a coma. Her fiance is struggling with what to do about her life. It is hard to be a support person to help a person make their own decision when you have very very definite ideas about the choice you think they should make. Or at least you did for awhile.

She has two doctors - one which says pull the plug, she will never recover and the other who says it is too early to tell, she is still improving. He says in one minute he is so tired of waiting and not knowing and having her not react to him at all - and then he says he will hold her hand forever waiting for her to wake-up.

His life is on hold while he waits for her to wake up. I want to help him move on with his life without feeling as if he is abandoning her. He worries if he is not there everyday by her bedside it will be his fault if she dies. But he is 22 and college is important. He needs to make money to support himself and his daughter. He can't be there everyday and give their 8 month old the attention she needs.

So does a point come where because her quality of life has to be set aside because two other people - the only other two people who truly care if she lives or dies - can't spend much time with her- so she shouldn't live anymore? We don't know what, if any, awareness she has - perhaps it doesn't matter to her that no one visits her for several days. Perhaps she is healing and has no sense of time. Is her life any less valuable because she spends days of it alone?

But I also wonder if the reason she doesn't wake up from her coma is that she doesn't want to. She, after all, attempted suicide. Could living be torture for her? She can't get the therapy she needs now to want to live. If she could - would she say pull the plug? We all have the right to refuse treatment, but she can't refuse it. Is it wrong to give life sustaining treatment to a person who has attempted suicide and failed?

I don't know anymore. I was sure before that she should be given as much time as she needed to recover. Months, years, whatever it took. But now I wonder. Is she hanging on or is she being tortured by being forced to live?

We can only guess.

Note: Everytime I post about these friends - something new happens. Well about the time I was writing this she woke up again. Still not communicating, but her eyes are open and she is tracking things.

End of day - she is moving a little, talking a little - things are looking good.

Saturday, September 15, 2007

Where will he be?

Where will my son be when I am gone. I've thought about that for 24 years and hopefully will think about it for 24 more. I have tried to put everything in place so that he can live a life as independently as possible. But he will still need support - a lot of support. Who will give it? Will he end up in a horror of an institution like where I worked when I was young? Will he lose all his freedom and be forced to live in a group home that does not respect his individuality? Will he have as I have planned a caring person in his life who will live in what is now my part of the house and be my replacement? But can I be replaced? Can any parent be replaced?

It would certainly be much easier to replace a person with the skills necessary to do the things I do if the Community Choices Act was passed. The passage of this act is absolutely essential to the youth of today as they will in the future be those who need support and have lived a fully included life and don't want that to end - ever. But the way we fund health care now - that can certainly not be guaranteed. It doesn't matter that if in my son's case and in most, but not all others, it would be far more financially efficient to provide the services he needs to live at home.

I need to feel that his future is secure. That he will have the life he wants. The life he deserves.

Friday, September 14, 2007

Does a worthy punishment exist?

Workers at a trucking company in East Butler discovered a body inside a burned out dumpster Friday evening. Police say the condition of the body is such that they can't even tell if it is a man or a woman. Police are asking anyone with information about a missing person in the area to call them at 724-284-8100.

Ritzert was forced to wear the lighter fluid-soaked T-shirt and was set on fire as he lay in a bathtub, police said. After Ritzert lost consciousness, Caldwell kicked him and put his foot on Ritzert's chest and neck for five to 10 minutes. The defendants (Tim Caldwell and Melissa Adams) then took Ritzert's body to a trash bin, where they set it on fire, police said.


Who does things like this? Where is the outcry when they do?

I read about this some time ago - 3 people began to live in the apartment paid for by social services with Ritzert about a year before the murder and refused to leave. Jason Michael Ritzert was a part of what we desperately want with the Community Care Choices Act. We want the right to live in the community. But we want that right with the support services we need we live our lives in freedom and safety.

Things equally horrible happen in institutions. They happen under the watchful eye of the same people who ignored Jason.
Summary of Rosewood Center Deficiencies Cited in OHCQ Survey
Released September 12, 2007 (a few excerpts)

Rosewood is not ensuring that complaints and allegations of abuse, neglect, mistreatment and injuries of unknown origin are promptly detected and reported and had documentation of thorough investigation for only 50 of 183 reported incidents reviewed by OHCQ.

• When an individual experienced numerous broken ribs on several occasions, Rosewood did not inform his guardian. An x-ray showed two fractured ribs after a Heimlich maneuver was performed while the individual was choking. Three weeks later, another x-ray revealed 9 possible fractured ribs that may have been of different ages. The resident again choked on food
about 6 weeks later, and again experienced four broken ribs. The family and guardian were not informed about any of these injuries.

• Staff who was supposed to provide 1:1 support for an individual with frequent seizures was found sleeping, too far away from the individual to be of assistance.

• Water drips out of equipment and onto food, including vegetables. Mold was found growing in the moist conditions, and water leaking onto floors poses a slip and fall risk.


So absolutely we need the Community Choices Act, but we also need the COMMUNITY TO CARE. How do we get the community at large to feel a responsibility that our most vulnerable citizens are not exposed to the horrors other people inflict upon them by their neglect or abuse? How do we recover the time when I was a child when everyone in the neighborhood knew everyone's business and everyone looked out after each other?

When I was 4 my mom became a widow. I remember feeling as if I had a whole load of people looking after me. We took in Sandra who was a foster child of 16 to help with the babysitting of me and my brother. I have good memories of that time because I was so surrounded with love.

My son is gregarious and well-liked. I imagine that if something happened to me - he too would be surrounded with love. But I worry. I have worried for all of his 24 years what will happen to him without me to protect him? I know all too well what places like Rosewood are like. And sadly I have become all too conscious of the hate crimes committed against people with disabilities in our communities when people live alone and in isolation.

How do we as people with disabilities stop being perceived as outsiders - as aliens - as people unworthy of life? How do we become an integral fabric of our communities?

How do we ferret out the people who are willing to abuse us? When 2 people burn a man to death they get punished, but what of all the people responsible for the atrocities at Rosewood - what punishment do they get? Does our society send a message that it is OK to treat us this way when we continue to refuse to close the institutions that continue to abuse us?

We need to live in our communities where people learn to be with us and us with them. We need to be a community of interdependent people who learn from each other the value of living. The Community Choices Act offers us that opportunity.

You're inconvenienced for a day - We're Inconvenienced for a lifetime

I was in Chicago all week with ADAPT. Unlike most of the protesters I stood my ground on the street corners just beyond where the police held vigil keeping the public away. So I handed out leaflets and talked to the people who had questions. Most people took a flyer. I don't know that they all read it, but many did right, then, and there.

Some would stop and ask me questions on their way back in the opposite direction an hour later. Some would read a bit that then come back to ask questions. Nearly everyone I talked to - whether they originally agreed with what we were doing or not agreed by the time they walked away.

What made the angriest stop and think was when I said that yes, I sympathized with the fact that they were inconvenienced - that they were forced to go where they did not want to go - but tomorrow they could go where they wanted to go, but how many people with disabilities had a lifetime of not being allowed to go where they wanted to go.

I was surprised by how many people had stories to tell me. Stories about a grandparent forced to go to a nursing home because they could not get any funds for care at home, about a sister who wanted nothing more than to die in her own bed but ended up dying 2 days after being placed in a nursing home, a parent who cried when they told me about the institution her child had lived in and how horrible it was but at the time she felt she had no other choice, the direct care worker who wanted to work in the community because she hated the institution but she couldn't live on the wages she would get working in a home, and the older man who told me about the days he worked in an institution and remembers it as filthy and not fit for humans.

The people do get it. Why don't the people who make policy get it?

No one who doesn't want to live their life in a nursing home should. Everyone in this country should have access to affordable, accessible, integrated housing. It's that simple.

Want to read more about it?

Friday, September 07, 2007

Jerry Lewis

I've read so much about Jerry Lewis, but what I haven't read is what pissed me off the most. JL called out "illiterate fag" and all of the hullabaloo has been about the word fag. What about the word illiterate? Not that illiterate is a bad word, but it was used as a word to demean.

People who are illiterate are often people who are disabled, and often cognitively disabled. So is what he said that much different than calling out retarded fag?

Why do so many people continue to give a man with such little respect for people with disabilities so many accolades? He apologized for saying fag, but I heard no apology for the rest of the spew of hatred.

And no one demanded he do either.

Thursday, September 06, 2007

Love Penalty

Gay marriage isn't legal. Same sex couples want the right to the benefits of a contractual marriage. They want to be able to adopt children together, to make medical decisions for each other, and to pay less in taxes.

On the other hand marriage between two people with disabilities can cause financial hardship. Benefits two people receive can be adequate to live on, but if they marry it can be too little. Some types of disability housing is restricted to people who are single. Some people because of having guardians are not allowed to marry.

In both situations we make people's lives difficult because they have fallen in love. We don't allow gay people to marry and we make disabled people suffer if they do.

If we provide a penalty to people who have long term relationships - are we discouraging people from becoming strong and more unified?

Why is the government involved in our private lives? Why are there benefits to abled-bodied heterosexual couples who marry and none to homosexual couples who desire to and penalties to disabled people who choose to. This is unfairness at its core.