A Collection of Disability, Arts, Journals, Tips…

I spent Halloween dealing with insurance companies who decided not pay for my wheelchair repair. They’re claiming that I “neglected” my equipment. What actually happened was that it imploded nine days after I got it when my assistant plugged it in. There were sparks; I was scared, as I was lying in my bed at time. Made you that they never told me there was a special way to plug the chair in, which is what they are claiming now.

I have always treated my mobility equipment very well, even when I was a little kid. It’s the only way I can get around independently. I know it’s a very expensive device and I appreciate having it.

However, I’m not going to let the insurance company get away with blaming this on me. I filed my appeal the moment I received the letter this afternoon, after three calls to wrong numbers provided by various MassHealth (Massachusetts Medicaid) staff members. It’s ridiculous. You call them for help and they misdirect you.

I’m giving up taking an integrated dance, which means disabled and non-disabled people dancing together, class on Saturday. As I love dancing more than just about anything else on Earth, one might ask what is keeping me from dancing this weekend.

The answer?

And, I bet those of you who have been reading my blog here can guess is politics. There is an Obama rally at the exact same time at the dance class, just my luck. As I told my assistant this afternoon, “God knows, I could use the exercise; but I could also do with helping McCain not get elected.”

We all make choices everyday, big and small. How I choose to spend this Saturday is just another one of mine.

I am on lots of disability lists. Normally, that means I spend a lot of time talking electronically about discrimination, housing issues, and so on. Not fun!

But it also means that sometimes I get to read cool stories like the ones below.

Twenty- three year old Matt Farnworth is an internationally ranked inline skater. He lives in Riverton, ME. He has Epidermolysis Bullosa, a rare disabling condition in which his skin falls off and is easily bruised or torn and feels like rug burn. But he doesn’t let that stop him from pursuing his dream. In fact, he just placed 7th in an international competition!

Robert DeBlois is the principal at a school for at risk kids in Providence, Rhode Island. He is also a quadriplegic and one focus of the movie Accelerating America, a movie that was shown at St. Louis film fest this year.

I am a Personal Care Assistance (PCA) user. That means that I hire (on my own) people to help me do things most people do on their own- using the bathroom, washing myself, cooking, housework, and so on. They even sometimes help me type entries into my blogs.

One of things that is really important to me is helping other PCA users live full and happy lives. One problem I’ve discovered is what do you do if you hire someone who lives with walking distance of you’re house? Are such people allowed to go home (when I don’t need them; I don’t need someone every second and I like my privacy, too, so sending them home as long as they’re only a phone call away was never a problem for me). However, other workers (who don’t live close enough to do this) complained that it was unfair.

My solution? People can still go home, but they only get paid for the time the actually work. That way everyone feels fairly treated and I don’t have to hear grief, which is always a good thing.

This is a speech I’m going to give to a group of students at UMass. I’m on the Speaker’s Bureau for the Stonewall Center. It’s UMass’ student group for gay, lesbian, bisexual, and transgender (GLBT) students. I’ve been on the Speaker’s Bureau for about 3 years now and I really enjoy it. It’s good practice for my speech impediment. Your vocal cords are muscles and if you don’t exercise them, which in my case includes talking to people who aren’t used to me talking, you tend to lose muscle function.

I’m Martina. I’m 32. I’m bisexual. I’m a person of color. I’m in a wheelchair; yes, people in wheelchairs do have sex and I’m very annoyed that some people think that you need to rank your identity the way NCAA ranks football teams. This is so annoying for me. I swear the next time someone asks me what I am first, I’m going to hit them in the face or at least I’ll tell them I want to. I had one piece of advice for allies it would be to support your LGBT friends and classmates in accepting who they are in all the identity categories to which they belong. I know I would’ve appreciated such a person when I was first coming out.

My coming out story is typical, despite my disability. When I was an adolescent, I knew I was different. I knew I liked both males and females, but I didn’t know there was a word for it. I was scared that if I told anyone, they would label me a freak of nature or something.

The first day of college I made a new, gay friend. He told me he was going to a GLBU meeting, my college’s equivalent of the Stonewall Center. This was the 90’s, so we didn’t think about being inclusive to trans people, perhaps as much as we should have. I didn’t know what the “B” stood for either. My new friend explained that that meant “Bisexual”. I said, “What’s that?” He explained it to me. I was so happy I cried, literally. I said, “I’m normal! Not deviated!” Of course it couldn’t be that easy, people don’t just come out over night. It took me 7 months to come out fully and I really hurt the person who I loved the most at that point in my life. She was very nice and forgave me, however.

The reason that I’ve given you all a printed copy of my speech is to accommodate my speech impairment, which is the result of my disability. Whenever I give short speeches, especially on panels like this, I find it easier to give people a hand out because they’ll be able to follow along. However, I obviously can talk and will be happy to answer any questions. If you don’t understand what I say during the Q&A session, just ask me to repeat myself. I promise that I won’t yell at you. I’m used to it.

I have Cerebral Palsy, a neurological condition, as you all know. However, my primary secondary impairment is an allergy to hard plastics. This allergy is life endangering. I carry an epi pen and take 5 pills daily in order to manage it.

I developed the allergy when I was 15, but no one knew what it was until I was 18. I was not believed. Some People thought I was crazy, even my mom and my best friend after while. But I knew something wrong.

After I coded blue following an operation they figured what was wrong. I was so upset; I was angry at the world. I kept telling everyone, “See, I knew there was something wrong.” I think my Cerebral Palsy planned a role in people not believing me and that they were trying to be patronizing.

The reason I’m telling you this is because there is a girl on the TV with an undiagnosed sickness, which is reminding me of my own trauma.

I’m so jumpy today, as I double took my steroids under doctor’s orders. I’m on steroids to combat severe, permanent, environmental allergies (I’m allergic too hard plastic, which is impossible to avoid in regular life). I usually take two kinds of allergy medicine, but every two or three months they decide I only need one kind of medication.

Then I need to double up on the remaining medicine just too keep breathing. Often, this gives me insomnia, which means a not fun night for both my personal care assistant (PCA) and me. I think that I slept about 2 hours and poor Amy, my PCA, got about 4. This is because I only called her when I needed her, not just because I was awake. At least now I have my right medicine, so hopefully I can get a nap this afternoon.

One of the hardest things about being a writer who needs help to get in and out of bed (other than people thinking your work is “cute” and the inaccessibility of venues for fairs and the like) is what do when the muse strikes at some weird time, like 3AM, after you’ve been put to bed. Some people don’t care and will wake their assistants up to fetch a notebook or something.

I’m not that sort of person. I only wake someone up when I require serious help (bathroom, turning, and so on). At the same time, however, I don’t want those lovely midnight muse impulses to be forgotten.

My solution? I use my cell phone to record ideas on my voicemail and play them back in the morning.

I have decided that I want to work with the Best Buddies program. I have two ideas; one is to be a buddy to someone with an intellectual disability, who hopefully likes to write. I have a plan to collaborate on poetry, stories, and/or whatever their (and my) mutual interests are. They have a program which pairs artist with intellectually disabled folks. My second idea is to create a zine with my poetry based on visual art created by people in the program. They’ll get a half the money; I’ll keep the other half. It’s my way of helping their budget shortfall, while earning money for myself at the same time.

Dear Today Bloggers,

I have decided to apply for the Amy Lowell Poetry Traveling Fellowship. I’m typing a rough draft here for you all to comment on. It’s odd that I am planning three years in advance. That’s not like me at all but this vision came to me in a dream so I’m going with it.

Dear Amy Lowell Committee,

My name is Martina and I am a person with a disability as well as a poet. I realize that because of my disability it’s going to be hard for me to leave the country for a year but I am ready to undertake the adventure. I will be traveling with an assistant, a college student from my local area who will accommodate my personal and disability needs while traveling for the Fellowship. They will also use the experience to complete their college thesis. We already have plans to premiere our separate collections together at various local book stores when we return.

The first trip I will undergo is a two month long journey to Africa to visit various disability rights activist friends of mine and see the programs they run. One such program is one I have worked with since 2002. It’s a school for disabled children in Uganda. It is the only free school of it’s kind in the country. I have donated supplies, money, and friendship to these students. Attempting to teach them that disabled people are capable of doing just about anything able bodied people are.

The second portion of my trip to Africa will feature attending a program for students with Cerebral Palsy in Mali. I have Cerebral Palsy myself and feel drawn to these individuals. The main problem with going to Mali is that I don’t speak French. I have taken an introductory class and know how to communicate survival and emergency needs. My assistant, however, speaks French fluently, so that should help things.

The last bit of my African adventure will be to visit friends of mine in Kenya. I will make sure to visit the national parks of the country and have a commentary on how accessible they are.

After I visit Africa I plan to go to Europe and see Paris. Seeing Paris has always been a dream of mine although I hear it’s not very accessible. I hope to be able to connect with some Parisian disability rights activists so that they will be able to help me get around. I plan to stay in Paris for 2 weeks.

The biggest aspect of my trip is an 8 or 9 week Olympic and Paralympic adventure in London in 2012. I will try to volunteer at the Olympics to get free admission to an event or two. As well as auditioning to be an artist and volunteer at the Paralympics, which in case you don’t know, are an elite level competition for physically disabled people. I hope that I will be able to find lodging with fellow disability rights activists so that I won’t have to pay for lodging.

On December 3rd I will be in Beijing China at the annual Chinese Protest against Ugly Laws in China. Disabled people are not allowed to go outside in the daytime because we are considered ugly automatically. Every December 3rd, which is the international day of disabled persons, disabled people in China go outside and protest of this law. I don’t plan to get arrested, although I have in the past for similar issues. However, getting arrested in a foreign country, especially one with as much of a hard line regime as China seems somewhat idiotic. I know the U.S. State Department will make no effort to retrieve me if I do this.

Well Bloggers that’s all I have so far but by the time it’s time to submit the actual proposal for consideration I will have every day accounted for. Rest assured.