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It's too bad Happy/Sad Sunday never caught on...

I'm new to PINT. Anyone participated before?

I Guess I was Screwed

Just a quick post. Last week I went to an appt at DORS (the local vocational rehabilitation peeps) which lead me to research more about the vision issues I was diagnosed with back in '91. These particular issues have a very high comorbidity rate with CP.

I learned 2 things. 1, that the category of conditions I have are called orthoptic conditions and that there are orthoptic specialists (orthoptists) that are different than eye doctors, and 2, that people with one of my particular orthoptic conditions (exotropia) have a rather big chance of also having a psyc diagnosis. Some researchers at the Mayo Clinic found that young adults diagnosed with exotropia as children are 3X more likely to have a psyc diagnoses then those who either have other orthoptic diagnoses or don't have any orthoptic conditions. Apparently I have comorbidities and risk factors all around...

A Meme

I found this meme through socialworker24/7. It's kind of exciting because I've never done a meme before and because I'm discovering new blogs. If you want to learn more and participate too, visit http://invisibleillnessweek.com

1. The illness I live with is: BIPOLAR II
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2000
4. The biggest adjustment I’ve had to make is: BEING CONSISTENT WITH MEDS
5. Most people assume: NOT FOR ME SPECIFICALLY BUT MOST PEOPLE ASSUME THAT MOST PEOPLE WITH PSYCHIATRIC DISABILITIES ARE VIOLENT
6. The hardest part about mornings are: GETTING OUT OF BED
7. My favorite medical TV show is: GREY'S ANATOMY
8. A gadget I couldn’t live without is: MY IPOD
9. The hardest part about nights are: GOING TO BED AT A REASONABLE TIME
10. Each day I take __ pills & vitamins. (No comments, please): I TAKE AN ANTIDEPRESSANT AND A MOOD STABILIZER
11. Regarding alternative treatments I: AM ALWAYS OPEN TO TRY
12. If I had to choose between an invisible illness or visible I would choose: WELL I ALREADY HAVE BOTH
13. Regarding working and career: IT'S FRUSTRATING
14. People would be surprised to know: I LIKE THAT MY DISABILITIES MAKE ME MULTIDIMENIONAL
15. The hardest thing to accept about my new reality has been: THAT I JUST CAN'T DO AS MUCH IN A DAY AS I THOUGHT I COULD
16. Something I never thought I could do with my illness that I did was: THIS HASN'T CHANGED HOW I VIEW WHAT I CAN/NOT DO OTHER THEN I NEED TO BE MORE CAREFUL HOW I BALANCE MY TIME
17. The commercials about my illness: I HARDLY WATCH TV ANYMORE, SO THEY DON'T BOTHER ME ANYMORE
18. Something I really miss doing since I was diagnosed is: I HAVEN'T HAD TO GIVE ANYTHING UP
19. It was really hard to have to give up: SEE ABOVE
20. A new hobby I have taken up since my diagnosis is: BLOGGING
21. If I could have one day of feeling normal again I would: NOT KNOW WHAT TO DO WITH MYSELF
22. My illness has taught me: THE VALUE OF FRIENDSHIP
23. Want to know a secret? One thing people say that gets under my skin is: "PEOPLE LIKE YOU..."
24. But I love it when people: REALIZE I'M A PERSON AND NOT A DIAGNOSIS
25. My favorite motto, scripture, quote that gets me through tough times is: ALL YOU HAVE TO DO IS SHOW UP
26. When someone is diagnosed I’d like to tell them: THAT THERE ARE MANY DIFFERENT WAYS TO DEVELOP A SUPPORT SYSTEM
27. Something that has surprised me about living with an illness is: WELL I'VE ALWAYS HAD AT LEAST 1 DISABILITY...
28. The nicest thing someone did for me when I wasn’t feeling well was: FORCE ME OUT OF MY APT
29. I’m involved with Invisible Illness Week because: WHY NOT?
30. The fact that you read this list makes me feel: OK

Privilege

A lot of feminist blogs talk about privilege. This is not something I've ever talked about before, probably because disability ranks so low on the kyriarchy (I just learned what that word means) that it's hard to think of it within this context. But there can be privilege associated with disability. There's healthcare privilege.

I've been privileged to have great healthcare throughout my life. For example, my powerchair cost us a $10 copay. A multi-thousand $ surgery cost us a $10 copay. Of course that was just the surgeons' bill, anestesia and PT, and the actual bed and meals all had their own copays. As did the multiple copays/week for the rehab that took over a year. But the point is, even though the total costs of that surgery (including prescription copays) was thousands of $ or maybe 10s of thousands of $, it didn't cost the million $ that it most likely would have had my parents been forced to pay out of pocket. I wouldn't have been able to have the surgery I needed had I not had top notch health insurance that didn't have a cap on how much $ they'd pay out/year or stuck firmly to the number of visits/year (we still had to fight to get enough, put the point is that we got it).

I'm writing on this topic now because even though I've had just OK health insurance in the interim, for the last 15mos I've had kick ass federal insurance that I can be on for the rest of my life. The day before I went on my vacation a few weeks ago I went to pick up a refill on my valium as traveling aggravates my spasticity. As 30 2mg tablets of generic valium costs just $11.99 without insurance coverage, my copay with my kick ass insurance cost just 53 cents. As I opened up the change compartment of my wallet and counted out my 53 cents, I couldn't help but think about my privelge and about the 100s of thousands of people in this country who have to choose between groceries or medication.

My local grocery store honors rite aid, target, kmart coupons that come in the Sunday paper and get you a $10 gift card for every new or transfered prescription. So in essence the store paid me $9.47 for getting my prescription filled there. I went and bought hair clips and eye shadow with my $10. That is a luxury, as I have enough $ that I don't have to spend it on food. That to me is the highest form of privlege.

Facts About Mental Illness

[Source: Medical Assistant]

Wordless Wednesday in Braille

Above is a sign on the outside of the gift shop at the Dole Plantation somewhere on the Island of Oahu in Hawaii (specific, I know...) In addition to the Dole logo, there is also a pineapple.

We were looking at vacation photos last night and my stepfather says "Look. Braille," half excitedly (it's under the logo). To which I said, "Is that why you took it?" He said no...

Guest Post: Just Wondering by Deborah

My second and last guest post is by Deborah who writes at Pipecleaner Dreams and cross posted this on her blog today. Deborah has 4 disabled teenage/ young adult children, and has an interesting view as a parent that I could never share--I'm not a parent. I thank you for writing Deborah as you fufilled my goal of bringing different viewpoints to this blog over my vacation. Right is a picture of Deborah and her family from this past 4th of July.

We parents of children with disabilities spend a great deal of time advocating for our children. And, that advocacy often involves some sort of inclusion for our children with their non-disabled peers. We will say that we long for the vision of all children, regardless of ability level, playing together, learning together, just generally being one big happy group. But what about within the world of disabilities – do we advocate for that same level of inclusion? I’m not so sure…

I’ve noticed over the 13 or so years that I have had children receiving special education services in my school district that even within the disability world we tend to segregate.

Children with milder disabilities, even some with invisible disabilities, do not socialize or learn with children that have severe disabilities. Parents of children with Down Syndrome, for example, usually win the battle to have their children educated in the general education classroom. The children move freely among their non-disabled peers. But my children with significant or severe disabilities are kept in separate classrooms, often in separate areas of the school, using separate lunch tables, and with limited or no access to their non-disabled peers. That seems to be ok with those parents of the Down Syndrome children. But it usually is not ok with the parents of the children with severe disabilities.

And then there are those times and events that include children with emotional or behavioral issues. Parents of children with disabilities that don’t have those issues can often be seen drawing their children closer, away from the ‘wilder’ children. Or, parents of children with Deafness will often only facilitate socialization only with other Deaf children, relying on the whole Deaf Community argument for their rationale.

More and more, I hear about ‘Autism’ classrooms. Are we sure that isolating children with Autism will make their adults lives easier and happier? Are we afraid to have children who are blind, or have ADHD, or who have orthopedic issues interact with the child with Autism? I know that I have heard many, many times that “I don’t want my child around that child with Autism. He will learn even more negative behaviors.”

Umm….So is inclusion only good when it suits us – when we think our children with disabilities will learn positive things from others? Are we being a tad hypocritical?

Guest Post: Experiancing Disability by Emma

My first guest post is by Emma of A Writer in a Wheelchair. She describes herself as "a 28 year old Brit who loves to write and spends her life on wheels." I'd write more of an intro, but I'm late getting this up and am rushing to get ready for a wedding. If you like what you're reading please take a look at Emma's blog. I hope you don't mind me using your facebook photo. Thank you for writing Emma!

I was thinking the other day about what happens when people who aren’t disabled experience the world from wheelchairs. I suppose similar things happen when they try other sorts of equipment but it’s always wheelchairs that get mentioned to me.

A friend of mine had brain surgery when she was younger. It was a couple of years before I met her and I’ve known her about ten years so it was a good while ago. I’ve heard her on several occasions talk about the (I think) couple of months she spent in a chair whilst recovering. The thing she seems to have taken away most was the memory of places she’d always gone, shops etc, that she couldn’t whilst she uses the chair. She’s literally used the words “You wouldn’t believe the places you can’t go” to me before. And all I could think was “Well, actually, I could.”

Someone else I know had a very nasty accident and again was in a chair for a long while (and then on crutches for a while more). We don’t know each other well but the first time we saw each other once she’d recovered a bit she was telling me how she knew what I go through now. And how she’d gone out for lunch and been shocked to find she couldn’t get in. She’d ended up making a formal complaint.

I just wanted to say “Welcome to my world” – she didn’t know what I go through but she’d gotten an idea. And my trip out to lunch wouldn’t have been ruined because I would have checked in advance out of necessity. Either I would have gone somewhere else or (if she did go where I think she did) I would have known from speaking to them that they have moveable ramps to get you in.

Actually, that makes me think of another example which I wasn’t going to include but I think I will. I recently went to a barbecue at someone’s house for members of a group we both belong to (it belonged to someone’s daughter I think). I wasn’t able to go to the toilet because of where cars had been left belonging to people who weren’t there, room for people to get through but not those of us on wheels. We spoke to the organiser and he suggested we go through another door. I pointed out that it had a step and he said “Oh, does it?”

I know several people who have done disability awareness courses and whose experiences on those courses have had a lasting affect. One guy I know who went on one is adamant more people need to do them (he works doing customer services for a train company and helps a lot of disabled people on and off of trains which actually is how I know him). Seeing the opposite side has obviously helped him a lot. Apparently one local organisation that runs those sorts of disability awareness courses always sticks people in wheelchairs and sends them to a specific take away because they always ignore people in wheelchairs.

Personally I’m not 100% convinced that more people do need to do them because I think that makes too much of it and perhaps even lessens their impact. But I do find it interesting to see how people react. However I would love to come to a day where people don’t react like that.

A positive story to end on. My parents took a relative with them to a funeral. She’s elderly and they took an old wheelchair with them for her to use. Afterwards she spoke to my parents and apologised because she never realised how hard being in a chair can be. I don’t think I would have agreed with that specific phrasing but I do know what she means. And it was a reaction that is much, much easier for me to deal with.

How have you found that others react to experiencing disability?

Tomorrow is Miracle Treat Day

Ok, so those pics don't match up, but whatev, they say:

Buy a Blizzard Treat at a participating DQ® location on Miracle Treat Day and $1 or more per Blizzard Treat will benefit your local Children's Miracle Network Hospital. You'll be helping to save and improve the lives of children in your community! Visit MiracleTreatDay.com to find a participating location.

If you're in Minnesota you'll be helping my favorite CMN hospital, Gillette Children's Speciality Healthcare. If you're down by where my mom is, you'll be supporting Children's National Medical Center in DC.There is a video that takes place at Gillette on the the Miracle Treat Day site. Check out the 2nd video. I don't know if there's another, this is the only one I've watched.

Calling all Bloggers (or just blog readers)...

About 2 weeks ago I put out a call to some bloggers I am FB friends with. I'm going on vacation starting early Friday morning and I thought instead of not posting I would line up some guest posters. Unfortunately I only got 1 response as some people are busy recovering from knee surgery or going through other tough times, some are just plain busy, and some never answered at all.

So I am putting this out to everyone now. Not just my FB blogger friends. If you have a blog and I'm not FB friends w/you, if I'm FB friends (or real friends, that's a shocker, people have real live friends still) w/you and you don't have a blog, if you're just a regular reader and don't have a blog, if you want an outlet for any topic you want, comment here and I'll try to hook up with you.

DEADLINE IS WEDNESDAY AFTERNOON