A Well-Intentioned Day

There are days when pain just gets the better of me. The medication makes me kind of droopy, and the continued pain makes it kind of hard to concentrate. Moving makes sharp pains go up my node, of all places. It’s a nightmare, I tell you. So I watch way too much TV. Today I got sucked into Star Wars II and III. I don’t know if anyone has seen Star Wars II, but it is actually an early version of Twilight. They even have the love interests sitting in a meadow of lavender and arguing about how they can’t be together and it’s tearing them apart. Problem is, I think Twilight might be better, and that’s a sentence I never thought I’d say- ever. Twilight is my favorite Worst Movie I Can Get Through Without Being Violently Ill. The Star Wars I-IIIs just made me sad- I’m a geek at heart and, well, I’m sure it made sense to Mr. Lucas at the time.

I did get some things done, and I don’t know if I should feel good about myself for doing a load of laundry and a load of dishes and unplugging everything after getting last month’s electric bill ($200!!!) or shitty because anybody does that and why can’t I? Obviously the question still plagues me after all these years because I don’t understand why- whenever my parents were sick, or when my sisters are sick, they soldier on and I can’t- I know it and they know it. It’s a great shortcoming of mine, and I don’t know why I can’t do it. But I try and fail, so I no longer want to try, knowing the outcome. On the other hand, what choice have any of us but to keep trying?

I am trying “Ticket to Work” again, but when you haven’t worked in 5 years and you have no references, finding a job can be hard. I used to be a clinical social worker and I’m guessing no one is going to hire me for that- so what do they hire me for? I know I’m rambling, but that’s the other thing that happens when you end up sitting o sitting up in bed in pain- a little bit of boredom. My mind races with all the things I should be doing, could be doing. I start doing some of it and I can’t see. Or I think about doing it and I think about the thousand of other things I should be doing (if I were out of bed) and I don’t get to anything.

And to add insult to injury, the Eagles lost in the final three seconds. THE FINAL THREE SECONDS!?!

New Post, New Year

I let this site go, but I’ve decided to make this blog one of my New Year’s Resolutions. I have been trying to figure out what I want to do, how I fit in in the disability community. After all, I really don’t go out all that much, but I do feel like I am learning a lot about the issues facing people with disabilities. I certainly know about the issues I am facing as a disabled woman and mother.

I usually Google disability and disability rights in the news section every morning to see what pops up. Today, the same irate paper popped up on 4 or 5 different sites. The headline?

“Nearly 11 million Americans on disability at the end of 2013” The gist of it is too many people are on disability and people are getting spoiled, spoiled I tell you, by getting an average $1,146.43 a month. I don’t think this author has ever tried to pay rent, buy food, pay for heat and electricity, and, oh yeah, those pesky medical bills because you’re disabled on $1,146.43 a month. The next two things he says also bothers me. He excuses disabled veterans from his rant. I appreciate everything veterans have done for us. But does that make those of us who are not veterans less deserving? Then comes the accusation people are “gaming the system”. Because $,146.43 a month is worth all the paperwork, getting denied, even if you are born with a brain injury, more paperwork, and then waiting two years for healthcare. Because having sick people wait for healthcare makes total sense. So yeah, who wouldn’t want to jump on this bandwagon?

Other news clips were happier: NBC is actually going to show some of the Paralympics on television this time, not streaming on computer. So that’s good. Happy New Year. Send me resolutions or ideas

Random Thoughts- Where Do We (Figuratively) Stand

It’s been awhile, I know. I got a sick. Actually, I had a month and a half of pain that knocked me on my-. Let’s just say unless I was ferrying my daughter to school and back, I was in bed screaming. It is amazing what you can do for your child. At 15, she is astonishingly self-sufficient, perhaps too much so. But I am a one parent household. And now, thanks to a second disability that is a lot like trigeminal neuralgia, but isn’t, it’s atypical face pain (that goes through my whole body, but I guess they don’t have an insurance billing code for that) I find that my daughter sometimes feeds me. It makes me so sad- I’m supposed to take care of her. She says she wants to be like me, still, and I don’t know why.
I am allowed to make myself feel bad. I shouldn’t. It’s not my fault I’m sick. I feel better now so I am doing more. I am doing my best. Which is why I am so angry about a blog posts I read on Huffington Post.uk I have to call this individual out. His name is Simon Stevens, and he calls himself “a leading independent disability issues consultant, activist and trainer” (don’t ask me how you train someone to be disabled, but if you have suggestions…) But he wants me to feel badly for not working. Actually, in a post written August 5, he basically says ‘I have CP, and is “…’sick’ from a nerve virus four years ago as well as having mild bipolar” and he works, so why can’t everyone else who claims to be sick and disabled?
Seriously? Now I know, this is from the UK, but England was home to some great disability rights ideation long before the US– they still are, even though right now funds for people with disabilities receiving services are getting major cuts. Conservative papers are calling people with disabilities ‘shirkers’, accusing them of faking their illnesses in order to get funds. Simon Stevens is squarely in their corner.
Everyone is entitled to their opinion, and should share it.People with disabilities should work and should be given every opportunity and resource to work. That is an opinion that I agree with, by the way. But insults are not opinions. Someone with CP knows how tough a day can be. I am assuming he can use his imagination and say “Gee, someone might have a more severe case of Cerebral Palsy, or Muscular Dystrophy, or stage 4 cancer. How about schizophrenia? I could go on, but I don’t think Simon Steven cares.
And that’s the problem, isn’t it? People caring about issues pertaining to people with disabilities.This is different than asking people “Do you care about the disabled?” What schmuck is going to say No to that? But the real issues? Yesterday Sen. Ted Cruz got up to babble on the floor on the Senate. At last count, he was there 18 hours. Why? To either stop ObamaCare (or the Affordable Care Act, which makes it sound, you know, good) or the Senate, which doesn’t do anything anyway. Except. There are some Republicans who have decided they would much rather shut the government down than sign people up for health care. But ask them if they care about the disabled- of course they do- the private sector will take care of it. Which is another way of saying “We don’t want to work on it” Private sector doesn’t want us, remember- we’re the people they wouldn’t insure, remember?
So where are we, in this age where every other minority seems to be coming into its own in terms of pride and recognition? Are we proud? Not the Simon Stevens of the world- he seems disgusted by his own, and I think he must feel ashamed of himself on some level to constantly pick on other people with disabilities for not being at his level and then saying everyone should be an individual. (On an individual note, learn how to use SpellCheck and other editing tools.) Are we recognized? As individual diseases that must be eradicated. Every weekend there is a new walk, every month is dedicated to something, every ribbon color is significant.
But there is hope- the amount of Universities that offer Disability Studies is growing. Sometimes it is a minor, or offered through a School of Health or Social Work, but it doesn’t matter how information gets out as long as it gets out. This is the beginning of recognition as Women’s Studies and African-American Studies was for their respective groups.
I don’t know what the near future will bring, but I know that I do not think people like Simon Stevens and Ted Cruz will be standing, literally or figuratively, in our corner.

So today I’ll be happy…

Which is to say I’m stepping off my soapbox for just a sec. Because a person with a disability is a person first, right? And I do think of things other than disability rights and civil wrongs. Today I am thinking of things that make me happy. Of course, my family and friends, specifically my daughter, who not only see me through everything but seem to think I’m pretty nifty as well make me happy beyond words, but then there are little things that I love.

Like my cat. Or coffee. And David Tennant (ok, I don’t love him much, but- anyway) And Emergency! Which means I love Randolph Mantooth. Now, for anyone who isn’t old like me, Emergency! was a TV show in the 70s about paramedics in the LA fire department. Except until the 1970s, there were no such things as paramedics. The show was actually responsible for cities starting their own paramedic programs. I like it because it’s kinda cheesy in that 70s way and the two leads had a bromance before bromance was invented, and I had an elementary school girl crush on Randolph Mantooth (I started young) I did think pyromaniacs must have loved to work on that show.

I’ve been listening to my daughter’s music mostly- All Time Low and Fall Out Boy. Not that I can’t listen to them, because I do, over and over (and I like it) But I also listen to Billie Holliday and the soundtrack to Supernatural. The song “Americana” is so simply beautiful, it does echo “Simple Gifts“.

I’d like to say I’m reading something now, but I’m not. I am reading a lot online about euthanasia (NJ is considering it) and organ donation. I started this because I am writing a screenplay, and I’m happy about that too. The two female leads are disabled, and if it were ever produced, I would want REAL disabled women to play them. (When is the last time you saw a real physically disabled woman on film or TV? Don’t strain yourself. Just admit it doesn’t happen)

The weather recently has made me smile. I read a story about a dog up a tree. You take moments where you ca. I guess that is the secret to life. My daughter just called and asked me “So, we can meet at 9:00 for Jobs?” She had to repeat it to me like three times because I don’t have a job interview and she is not allowed to have one. She of course was talking about the movie. Which I’m very happy to go to.


I am unhappy

It’s not something I’m allowed to admit very often, even to myself. But I went to the “Ticket to Work” office today and had a meeting with a very nice guy. So it’s not his fault, really. He thought I was just great. A real inspiration to people who didn’t have half the problems I did who sat and complained how hard their lives were.

So he sent me to another office, the Occupational Rehabilitation Center, so I can be re-trained to a job that cannot make more than $700.00 a month for the first sixth months if I am to keep my SSDI and Medicare (less than $2,000.00 for myself and my daughter, plus Medicare only covers me) There was other money mumbo-jumbo that basically ensures that people with disabilities trying to get off SSI or SSDI will stay poor, but that, amazingly enough, is not what started me down this path of unhappiness. It is the thought that I have to be re-trained.

I have two BAs, an MSW, and I’m about to be trained to do data entry or stuff envelopes. Maybe, if I’m lucky, I’ll be able to answer phones. But I’ll never be a counselor again.  I’m so much more than this. Or I used to be. This feels so degrading, and I can hear my sisters telling me they don’t care, because it is something I have to do, but they do something meaningful with their lives. They have important jobs. One of them has two wonderful boys. The other works for Harvard, and she is helping me now.

I’m so grateful for my sisters’ help, but I feel incredibly guilty. I always thought I should apologize to them. I was born and they must have known they’d be stuck with me like- forever. But, I didn’t want that. Sorry doesn’t help, does it? I want to change it. I’d do anything to change it.

You see, I was brought up almost like I didn’t have a disability. No one around me had one; the issue came up, I’m not saying it didn’t, but my family’s expectations of me were the same as they were for my sisters. Part of me is sad today because I did go to college and graduate school, got married, had a child, and worked in several different jobs. Because.

Because now I am alone and I have no job, the child is still with me, but she sees me in pain, or wiped out because of medication. She remembers when I worked. I don’t. I want to get so much done that I can’t seem to finish. How can I do anything to make a difference when it hurts to move?

I  do know I won’t be unhappy, or as unhappy tomorrow, I also know even if I stayed this unhappy, euthanasia wouldn’t be the answer. Why? Because I very well may be depressed. Usually we send depressed people to, oh, I don’t know, MSWs counselors. If people are disabled or diagnosed as terminally ill. 4 states in the US (with more debating it) they can kill themselves with a doctors prescription. If people do not live in WA, MO, OR, or VE, they can go to Switzerland. They don’t require you to be terminal (just having MS or Schizophrenia will do) they do require you to get your own doctor to sign off on it.

Why are we OK with this? Not just OK- we have snappy names like “Dying with Dignity“. If people are not disabled, we get them mental health, maybe put them in a mental hospital. But only if they are physically worthwhile? This. too. makes me unhappy. I feel alone and worthless tonight, but is this really how the world views me?











Why I Hate Talk Shows

I’m watching “Katie” right now. I shouldn’t. Really, I shouldn’t. It’s a repeat about heroin addiction, but they keep hammering home how awful those pain pills are. And here she is folks- the woman who had a long-term back injury and was prescribed oxycontin and got on the doctor prescribing merry-go-round. You know the one. She went to this one for Oxy and tis one for Doulotin and this one for more Oxy and this is somehow the doctors fault? No one ever mentions people who are in pain who are responsible and who need these helpful drugs. Now if you use these medications responsibly, we are would-be addicts. I know, I’ve been called an addict already I would gladly stop taking these God awful pills that do nothing for me if you take my pain away from me.

It’s not like we would show up on the talk shows (unless we are victims of a bombing, bizarre car crash, or have to bite off our own arm). Dr. Phil, Katie and the rest of them will deal with all sorts of behavior unbecoming, but a show on physical disabilities, no. Which is too bad, considering. Talk about kids in Florida stuck in nursing homes. They’re cute. Talk about euthanasia. Go on Dr. Phil, you’re from Texas– they like killing everyone there. (I’m just talking about the people on death row- the ones with an IQ of 70) Even talk about the spate of locking people up in basements for their Social Security Checks. What does that say about us that it wasn’t even a hate crime- and nobody cares?


41 protesters from ADAPT were arrested Monday. They

41 protesters from ADAPT were arrested Monday. They broke through the cordoned off area in front of the White House.  Protesters were chanting, “I’d rather go to jail than die in a nursing home”. After negotiations with [a group leader], the arrested protesters were let off with a citation.

Protesters are unhappy about what they see as Obama’s lack of follow through in helping people with disabilities live in the community rather than nursing homes. ADAPT says Medicaid has an “institutional bias.” Studies have shown that community-based alternatives are almost always less expensive, and promote better mental health for people with disabilities and a better community for everyone. So why the “institutional bias”? I’ll get to that. But first, what is ADAPT, and how many political-action groups are there out there for generalized disabilities? (It does seem every sub-group is getting its own lot together, which is helpful for research, but may be unhelpful when we try to speak as one; i.e. people with disabilities)

ADAPT stands for American Disabled for Attendant Program Today. According to their website, they are a “national grass roots community of disability rights activists”. Their main goal is to make sure people with disabilities live in the community, and while in the community, are able to receive adequate services, but really touches on all disability civil rights issues. They do this through “non-violent direct action, including civil disobedience.” ADAPT started 30 years ago this year. [quotes taken from ADAPT.org, main page]

Every other group I have run into seems very state-centric. Even ADAPT is, although they have a national organization to bind them together. And I get it, Medicaid is state funded, but in a lot of ways I don’t understand. Why is AARP so strong? Or the NRA (God help us)? Because they are national organizations- if we keep dividing each other- be it by illness, or state, or type of funding we receive- we will never have a seat at the table. The table? The tables of government, of media, of finance, of medicine.