I got this in a chain email. There were other good ones there too, but I feel this one in particular is very applicable to this blog. It reminded me of and is very relateable to this.
When I was a little kid listening to the radio in the car I would always get confused by traffic reports. Why would they always announce "disabled cars?" Why would other drivers need to know where disabled cars are? To me disabled cars were cars with handicapped license plates (like ours), not broken down cars. This confused me for years. Especially because if people really did need to know where all the cars on the road with handicapped license plates are, how come our car was never mentioned on the radio? How come no one ever called in to let people know about us? It never made sense to me to call a broken down car a disabled vehicle. Disabled comes from disability. I have a disability (now 2). But I am not broken down.
[image description: the kenguru electric car. Now that is a disabled car.]
The last 2 winters I've written posts about ice; I guess it's time I write about snow. Its been snowing for at least the last 6hrs if not longer. The flakes are arguably the biggest I've ever seen and they show no signs of slowing down :-( Usually the first snow of the season is small, melts as soon as it hits the ground. Not today. My roommate said her parents (an hr SW) already measured at over 3in.
I HATE snow. I hate it, I hate it, I hate it!!!!!!!!!! Was that clear enough? I have never liked snow. As a kid people thought I was weird, but as a gimp it's just not conducive to anything good. It can get very hard to walk in, especially since my ankle fusion because it's now harder to walk on uneven surfaces then it was before. Ice is a BIG no-no both before and after. I slip too easily. Did you know also that the motors on my chair are not covered up? They're completely exposed. Everyone always tells me to watch the joystick, that it can short if it gets wet. Well, I've never had that happen (even that time in July), but I did once have my motors short when I tried to go out in snow that was too high. Don't let snow touch the bottom of your chair. Motors cannot get wet. Lesson learned. Another thing I've noticed about snow is that particularly after big snow storms large piles of snow tend to get shoveled / plowed into the handicapped parking access aisles. Can you say GAAAAHHHHH? It often takes days after everything else for those piles to completely melt.
So how about you? Do you love snow or HATE it? Do you find that it impacts your / your kid's disability? Any tips for managing snow with a disability? I'm sure lots of people would like to have them.
[image description: the UN symbol. It says UNITED NATIONS enable]
I haven't seen any posts. Well, scratch that. One. I feel like it's my duty to write about the Convention on the Rights of PWDs, but I forgot the USNUSP teleconference so I know nothing about it. Turns out though I was thinking of writing a post on Susan Boyle--I live in the USA, she lives in Scotland, loose way to make a connection, I know, but any commemoration is better then none. The original title of the post was going to be "Susan Boyle, I Want Your Memoir." I'm sure it's in the works, and I'll be one of the 1st to preorder.
I was thinking about how I heard she had the most sales of any female artist EVER on a release date. Media making the point that you don't have to look like Brittney apparently. No one is snickering now. I was listening to clips on iTunes and I won't be buying the album. If it was just show tunes or something I would, LOVE her voice, but it's a weird mix, some songs are odd for her I think. I will however be buying 2 songs-- 1) I Dreamed a Dream. As much as I hate to say it, I find it inspirational. Maybe not the words as much as the title and the connection. The second is You'll See because she's said that's her inspiration.
You'll See is her dig at all the people who used to beat her up as a kid and verbally abused her because she has at least 1 LD and she was different. That's what I was thinking about. I was thinking about how she has an opportunity to do so much good in the world. To turn that around. Not that 12 year old nasty kids are going to read her memoir, but if enough teachers do and enough teachers feel empathy (NOT sympathy) and begin to teach character, things will slowly turn around. Susan has the ability to be a catalyst for so much change all over the world now that she is an international superstar. She seems comfortable enough talking about her past and I hope that continues.
So this is my contribution to International Day of PWDs. If you know of any others out in the blogsphere, please comment and point me in that dirrection. Leave a link. Thanks!
I'm looking to expand my readership and increase the amount of comments that I get. Any of you successful bloggers have any tips for me?
I was flipping channels earlier and landed on CSPAN, paused for a bit, saw they were reairing a press conference on adopting a single payer system from Wednesday. Then I passed because CSPAN is boring. But I don't have cable and nothing was on and I SUPPORT A SINGLE PAYER SYSTEM, so I watched it. And it was interesting and powerful.
I've never thought of viewing the giant 2000 page healthcare bill currently being debated in congress as a health insurance bail out, but that's what it is. Only 1-2% of Americans will be able to access the public option. Did you know that if someone has employer sponsored healthcare they will NOT be allowed to access the public option should they want it? What if it turns out to be better then the policy they have? Too bad. So this bill is NOT lending to increased competition as congress keeps claiming, but locking people into only what their employer wants to offer and not allowing free mobility between plans. How does this help America? It doesn't. And it will still leave 17-22 million people without any coverage. While that is certainly better then 46 million that is NOT GOOD ENOUGH. Private money and government subsidies will be going to pad the pockets of FOR PROFIT insurance company CEOs who on average make $11 million a year.
I've been a fan of a single payer system since I had to prepare arguments for a debate in class 5 years ago. Did you know that, as those stats I looked at stated, the US and South Africa are the only industrialized nations that do not offer every citizen a minimum level of care? The representatives at the press conference, which was sponsored by the activist organization Single Payer Action, stated that it is only the US, so maybe South Africa has gotten its act together over the last 5 years. Shouldn't we follow suit? As an American, I can arguably state that I am a citizen of the most powerful nation in the world, but yet the World Health Organization lists us as 37th in over all health system performance. We should be ashamed of ourselves. We can do better then that.
Dr Carol Paris, a psychiatrist from southern Maryland, activist and representative from Physicians for a National Health Program spoke of a patient who lost her job and insurance and isn't sure how she's going to pay for necessary surgery. She also spoke of another patient whose employer switched plans to one whom she does not participate in, so this patient is now forced to find another psychiatrist. She believes that a single payer system would eliminate competition from for profit companies trying to win your business by allowing you to see any doctor you want and go to any hospital you want, switching to doctors competing for your care. In this system everybody wins, because people are allowed to switch to/keep GOOD DOCTORS instead of being forced into narrow options of their plans. This forces doctors to be better doctors and will result in patients getting better care. This, she says, is competition she supports. I do too.
If you're a consumer of psychiatric services you know that many physicians / therapists do not accept insurance because of how little they receive. Many, even those with insurance, go without because of this, and I have a feeling that this would change in a climate of a single payer system. More people would get the care they need because more people would be able to afford it.
You may argue that if more people start seeking care and the amount of providers do not increase, this will overload the system, make it impossible for you to get in to see someone when you need. Well I don't know about you, but if waiting a bit longer allows 46 million Americans to get care, keeps between 18-45,000 (depending on the source) people from dying per year due to complete lack of or inadequate coverage, keeps people out of bankruptcy (2/3 of all bankruptcy is caused from uncovered medical costs--an average of $18,000-- and 3/4 of those are middle class insured individuals), allows people to have the luxury (if you want to call it that) of no longer having to choose between buying food or paying for prescriptions, then I'll wait.
There are many more reasons why I support a single payer system, but I want to keep this short. Did you know that there is also a single payer bill that was introduced into congress in January? HR 676. The bill is sponsored by John Conyers (D-MI) and is supported by 88 members of the house. It is only 30 pages instead of 2000 (I haven't read it).
I was thinking just now of board games. For months I've been meaning to stop by Target and pick up some UNO cards to donate to On Our Own. I don't know why I never got there when the weather was nicer. It's a 20min roll in the chair or a quick bus ride. I even went to another store right there once and forgot. Well last weekend friends of mine were driving there so I tagged along. Now I just have to remember to bring them. I also ended up buying Farkle, a dice game I've become addicted to playing in its online form. UNO is theirs, Farkle is on along term loan, meaning I can take it back whenever I feel like.
Anyway, so I was thinking of board games and my mind wandered to SNATCH, a game I haven't played in years. People would like it if I even knew where it was, remembered how to play. My mind wandered to bringing it in, people asking where I got a game no one's ever heard of. "I got it in a game store in Mall of America. I forget when. One of the times I was there, 1999 or 2002. I think 2002."
One of the times??? People look perplexed always when I tell them I've been there 6 times. Ever play the ice breaker game 2 truths and a lie, where just like it sounds, you go around telling 2 truths and a lie and people have to guess what the lie is? Some standards, I've been to Mall of America 6 times, I grew almost 2in in 7hrs (from surgery, but I leave that part out), and when I was younger I wanted to be a figherfighter (someone once thought that was true). The Mall of America is in Minnesota, and remember I live in Maryland. That's 2/3rds of the way across the country. Who would go there 6 times? It's a mall (with a tiny amusement park and an aquarium inside). My orthopedist was at Gillette. I had 4 surgeries there, and went for 2 just visits. I will always hold a soft spot in my heart for that hospital as odd as that sounds.
Every time we went we spent some time at the mall. My surgeries were always on Tuesdays so I could be scheduled for appointments, xrays, etc on Monday and we always scheduled Sat flights just in case. We had time to kill on Sunday, so we went to the mall. The first time we went to Gillette we tacked a few extra days onto the trip to do some sightseeing. We ended up just seeing the mall, spending 20hrs there over 3 days. My grandma has to touch everything... Eventually we got it down to just 6hrs in one day, hitting up must sees like the Italian restaurant Tucci Benucch (MMMMMMM........) In all those trips I've never been to the aquarium. We always saved it for if we have time, and the people who actually walked the mall got worn out.
My view is if you have to have surgery you might as well have some fun in there too. It's possible to do both, even in a hospital where there are therapy dogs and playrooms to balance out the pain. And a great cookie store at the mall :-) Is it wrong to on some level look forward to going for surgery? I think not. I think that's the way it should be.
So I took the bus to my support group Friday like I usually do when it's nice out, which it was exceptionally Friday. It was a little odd in that 1) the 7:20 driver for that route was on the 6:20 run and 2) the sign stating that the seats across from me were for chairs, old people, etc was upside down! Can you tell? It's blurry I know. Hard to take a good pic on a moving bus. Why I didn't check to see if the one on my side (I was in my chair) was right side up or upside down, I don't know...
I read a NYTimes article the other day, Where Can the Doctor Who’s Guided All the Others Go for Help?, about psychiatrists who need their own psychiatrists, written by a psychiatrist. Some of the concern I understand, some I do not. If you live in a small area and most around are former students / patients this could be awkward. Not everyone has that problem, not everyone teaches, but here is a problem much more common, not just related to psychiatrists, but to everyone:
There is also the factor of experience ... "I might have some trouble going to younger colleagues. It’s hard to understand the issues that come up in the course of a life cycle unless you’ve lived it yourself.”Dr. Rachel Seidel, a psychoanalyst and psychiatrist in Cambridge, said that when people feel vulnerable, “we want someone with more insight than we have.”
“It’s a paradox,” she added. “Do I have to have gone through what you’ve gone through in order to be empathic to you? And yet, I’d have a preference for someone who’s been around longer.”
So far in my life I haven't come across this issue myself. I'm only 24 and it should be another year or 2 before my peers are beginning to be credentialed, but I'm not sure it's all that much an issue. Dealing with family dynamics is dealing with family dynamics. Dealing with depression is dealing with depression. Prescribing meds, big deal. The issue of sex (in both senses of the word) is much more of an issue to me.
When I was looking for a therapist I told the person I'd asked for a referral from it didn't matter to me whether it was a male or a female. I'd had both before, my most immediate past therapist is a male, I have high standards and I just cared that they were good. Told her I trusted her. Turns out I was wrong. I realized while I was comfortable discussing my resistance to dating with him I never would have been comfortable discussing my sex life with him. I'm only comfortable having someone who is committed to being a long term therapist as I know they, like botox, are something I will always have a need for, and this is something I will (hopefully) be discussing with this one. He's also old, about 40 years older then me, but that was not the issue. I'd have a problem discussing this with a younger male and would not have a problem discussing this with either a young or seasoned female professional.
The issue of life experience is something that ended up almost being an issue for me, as I ended up trying to find any reason I could not to like her (didn't work). Why I would do that I would rather not discuss, but makes total sense in hindsight. I was scared of going to someone with no experience with disability. While I agree that depression is depression, the route cause of depression can vary, and in my case the route cause of my depression can quite often be intimately tied to my physical disability. Would she really "get it?" Mentioned past therapist was my one and only disabled therapist and while I always skirted the issue, I knew kids stare at him all the time just as they stare at me all the time. He was firm in telling me that this is a non issue and that the only issue is the type of therapy someone uses. He was right.
All therapists should have cultural competence. Should an Asian client not see a white therapist? Should a Jewish client not see a Christian therapist? Why can't a 52 year old client be helped by a 32 year old therapist, although not a cultural issue? Why can't a crip be helped by an AB therapist? That is a cultural issue. What matters I think is openmindness on the part of both the client and the therapist and the treatment methodology / personality of the therapist. Can you handle a therapist with a dark sense of sarcasm, for example? Can you handle a therapist who answers all of your questions with "what do you think", or will you want to strangle them?
Would I be able to help someone with marital counseling at 24? No, but I haven't been through training yet so maybe I could. Could I help someone with parenting issues? I think so. I was a kid, I have parents, I remember my childhood well, and I have a lot of training in child development. Family dynamics are family dynamics. Observe yourself, observe your friends / relatives dynamics too...
What happened with my experience / cultural issue? Well, #1 it turns out that most of what I am dealing with are people issues, not disability issues, related to dynamics and diagnosis. #2 Right about when I started with her is when I began a total paradigm shift in my conceptualization of disability. So I guess I've just taken her on my journey with me. That's the way it should be. I decided at some point that one of my callings in life is to educate people about disability and that I had no problem educating her too. One of the greatest things I can do in life is to make it easier for her to help someone else to get to where I am, to be OK with their disability. My views, I think, aren't so mainstream and she's been as openminded as a person can be. I don't think she's ever had a problem understanding where I'm coming from. In fact, she gets it so easily, sometimes it weirds me out. My psychiatrist, not there. Frustrating, but he doesn't need to be. In today's society a psychiatrist's job is focus on brain chemical levels, not to guide you through paradigm shifts. Just MHO.
Dear parents,
I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850
I was going to comment on Therapydoc's post, Your Depression and Your Kids, but now that I'm no longer depressed as of Friday night (ironic) and can write, I thought I'd make it a post. It also happens that this is the topic for the next blog carnival. TD seems to think that there is no possible way to be brutally honest with your kids about your mental state without negatively affecting their mental state. I disagree. I think being as evasive as she suggests can actually cause harm in the form of self-blaming.
[image description: a dad in a wheelchair reading a book to his daughter who is sitting on his lap]
Says you: Why are you talking about this? You don't have kids.
Says me: I don't have kids. I don't even have a boyfriend (as I said in my last post). I also don't want kids, never have, but as my mom's shrink used to tell her, "Never say never." As my stepfather says, "Life is full of surprises." (I'm sure you get the connection there) I have 2 disabilities, and things like this need to be planned ahead.
That's right, I've said it again. I have 2 disabilities. Both equally impacting. You have to start from the beginning you know, with why mommy uses a chair, crutches, AFOs, waddles, doesn't drive (thus can't pick you up from school like the other mommies), walks/talks worse when she's tired (don't let anyone ever tell you I'm drunk). I don't think anyone would disagree.
Why wouldn't you then handle psychiatric disabilities in the same way? With the same openness and care? The connections all over my brain are fuzzy and the connections between my brain and all my other parts are fuzzy too. They've been that way since the day I was born. Whether this disconnect was caused by an anoxic brain injury or a little "nugget" (for lack of a better word) passed down in my DNA doesn't matter. Fuzzy is fuzzy.
I don't think a day has ever gone by where I didn't know I have CP, didn't know what it was called. I think it's better that way. I can't imagine not knowing. I also know what not knowing does to kids, but for privacy reasons I can't discuss that situation here.
"When mommy was born she didn't stay in her mommy's tummy as long as most babies do. Mommies help babies grow inside their tummies and Grandma couldn't help me finish growing in there, so I had to finish up after I was born. That's harder to do. It's different growing outside of a tummy, you have to grow different, sometimes your brain grows different, and even after you're not a baby anymore you keep growing different." Then of course you emphasize that different is different, not bad, not good, just different. You have green eyes, your best friend has brown eyes, so and so is really good at soccer, and I come with a wheelchair and a nice waddle.
Then of course there's the other one. "Mommy's brain is different in more then one way. Mommy is bipolar. That means that sometimes Mommy's brain might make her really sad and sleepy for no reason. It might make me sad when I really want to be happy, but my brain makes that decision all on its own (emphasizing that it's nothing they did). Sometimes mommy's brain might make her talk a lot really fast and sleep very little (leave the word happy out of it. The last thing you need is a kid who confuses manic / hypomanic states with actual happiness). Everyone needs a good nights sleep. But don't worry, mommy goes to Dr Suchandsuch when that happens and s/he helps me out."
[image description: a brain]
In my perfect world my kid(s) will be able to put a face with that name. My hypothetical kids will have met said psychiatrist so that s/he can explain to them how they help me. If I have kids, when I crawl into bed I want my kid to poke their head into the room and ask me if I've seen / phoned / am going to see Dr Suchandsuch. When mommy's like this she does that. Kids don't need to know the triggers, that probably is emotional incest. Kids don't sit in on your appointments (you sit in on theirs and help co-facilitate explanations). But they need to know why on a basic biochemical level and they need to know that you're getting outside help. If they know grownups are helping then they know it's not their job. But the only way for you to know that they know this is for them to meet the person(s).
I also don't think it's wrong in the elementary school years to show your kids your WRAP. More when mom's like this she does that. Kids that age need concrete information, not abstract evasive information. That's how their brains are programed to process. "My brain's working too fast today / decided to make me depressed today. I'm going to the gym because it calms me down / makes me feel better." To tie in my other disability, "Going to the gym helps my muscles A LOT." DON'T ask your kids what they can do for you, but DO involve them in your WRAP. "I'm feeling depressed today and I looked at my list and decided I think it will help if we go out for ice cream after your homework is done." Kid hopefully knows that putting real clothes on and going out is an A+ strategy. I don't think this is "incest" because you're not asking them to come up with the solution, to "fix" you all by themselves. You're helping them to be able to process your differences effectively and letting them be involved to (I think) a healthy degree. Kids want/need to be involved.
Done with my spiel. I must say it turned out very child lifey.
[image description: the wheelchair dude gettin it on with his wheelchair lady]
The other day I read yet another article about sex and disability from England focusing on prostitution. (for others, click here) If you click on the tag prostitution below, you will see that this is a hot button issue for me. I almost feel as though I've said all I can about this issue, except that I want to revisit one thing that was touched on (no pun intended) in the article.
Says a sexual surrogate,
"I see a lot of women with cerebral palsy. Sex is painful for them because they can’t open their legs fully and they get spasms. But if they learn how to relax and experiment with different positions, they can overcome that. Having an excited boyfriend is not the best way to learn.”I'd have to disagree with that. He seems to make that an absolute truth (the boyfriend part) and it isn't necessarily. TRUST ME, I've thought about this a lot, as I have said issue. Not that I've been able to have first hand experience yet, but I believe in being prepared, realistic, and talking. Hasn't anyone ever heard of talking? Talk to a friend with a disability, a friend without a disability, a friend who's a virgin, a friend who's a slut, a shrink, a physician, your significant other, & why not have a talk with yourself in your head while your at it. If you want to have a satisfying sexual relationship / experiences you need to get over your/society's hangup/embarrassment about sex and start by talking about it.
So my roomate has a close friend who lives 3 floors up. He is over all the time picking on the both of us. I have another friend like this, it just rolls right off. He certainly doesn't mean anything by it--I am sure of it. Anyway, he asked me this question which required a quick response with quite a bit of wit if I was going to give it right back to him. Except I had nothing. To bad the Trench Warrior wasn't around. Her's is the kind of wit I'm talking about. So I was resigned to answer with "I don't know." Then I said (without thinking I swear) "I'm not so quick on my feet..." Hey, it's a figure of speech.
Why I needed to apologize for my crappy answer I don't know, but as soon as it came out of my mouth I realized exactly what I'd said. He however didn't hear me because he had turned to tell my roomate that he'd asked me thus and such and my answer was...
Then he turned to me and said "What?" To which I was able to say "I'm not so quick on my feet, both litteraly and figuratively." By the way, at the time I was sitting on my bed and my wheelchair was parked temporarily in my bedroom doorway between the two of us! What a great way to recover! GO ME!!! Also, go him for appreciating my humor. Some people respond with a blank stare unable to decide if it's appropriate to laugh or if they'd be a jerk.
Found through someone's facebook album:
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My BADD Posts from 2008 & 2009:
