Wednesday, October 19, 2011

Disability essay I wrote for AARP

Note: I wrote this essay for AARP hoping to win $25,000 for ADAPT. Today, I found out I didn't win! Thought I'd share it anyway!

Being a woman in a wheelchair, I was always expected to be the helped rather than the helper. My cerebral palsy makes it impossible for me to use the bathroom on my own or get dressed or undressed myself, as well as about 1,000 other tasks most people do independently. However, I was born with a servant’s heart.

I am happiest when I am being of service to a fellow human being, especially if that person also has a disability. In pursuit of my ultimate goal of the complete and total liberation and acceptance of people with disabilities (PWD), I have spoken to numerous media outlets, lobbied politicians, and used my literary talents to inform individuals about the situations PWD confront. This past week, I marched on Washington with hundreds of other activists in defense of Medicaid and the right to receive long-term supportive services in the community setting of your choice.
I believe people of all ages have the right to determine their own lives and receive services where they choose; not just be forced into an institution when they require assistance, the more costly and less life-affirming alternative.

When I say, "I'd rather go to jail than die in a nursing home." I mean it. I've gone to jail for what I believe in. I will not hesitate to go back until the powers that be realize that PWD and elders have something valuable to offer and don't need to be locked away and forgotten about in institutions.

Monday, August 29, 2011

Big Girl

My friend,disability rights activist colleague, and personal assistance services user Carly, just recently underwent one of the rituals of parenthood, having her oldest daughter move out. The daughter in question is 21. Her name is Lena.

What makes Lena different from other 21-year-olds is that she has multiple disabilities. In addition to having Cri du chat syndrome- a rare syndrome that results in feeding problems because of difficulty swallowing and sucking, low birth weight and poor growth, severe cognitive, speech, and motor delays ,behavioral problems such as hyperactivity, aggression, tantrums, and repetitive movements , and unusual facial features. Additionally, she's nonverbal and has a feeding tube.

Most people don't think anyone like Lena can live independently. But Carly did and earlier this month she moved her daughter into the guest house. There, Lena has her own staff and pretty much runs her own schedule.

Likes every other adolescent, however, Lena was none too pleased when mom showed up to check on her unannounced one morning. According to Carly's Facebook status, Lena signed the following: "no no no", "stop stop", "go go go".

As a friend on Facebook said, "Hello, Ms. Independent!" As bittersweet as that moment must have been for Carly when I dream about parenthood I can only hope that, especially if my child is deemed as unlikely live independently at Lena was, I someday share the same moment. If I do, it will be the greatest triumph in my life as one who works for justice.

Sunday, August 28, 2011

In Response to Can't Even Go to the Park by Stacy Trasancos

Dear Mrs. Trasancos,

I read your blog. The post Can't Even go to the Park alarmed me in ways I can't express, although I will try to. I, like you, must deal with people I don't agree with from time to time. One of my very best friend's in the world is a rather outspoken atheist. As she lives in my house and works for me, I have asked her not to discuss the subject with me.

You see, I am not an atheist, but a proud member of the United Church of Christ. As she lives in my house I think it is only fair that I can lay down rules like this. After all, no one is requiring her to live in my house or to be in my employ.

If I was to come to your house, I wouldn't wear any openly bisexual apparel or bring up the subject unless you started telling me I was evil or something along those lines. It's your house. I go by your rules. If, however, we are out in a public venue, I have as much right to express my identity and opinions as you do yours. This doesn't give me the right to come bother you or you to come bother me.

If one of your children decided to come talk to me, which little children often do because they find my power wheelchair fascinating. I would smile, answer any questions they had, and probably ask where mommy was.

If they happened to ask why I was holding hands with a woman or why I had a rainbow sticker on my wheelchair I would tell them that it's because I think its okay to love whomever you love. This does not make me a horrible person nor am I trying to infect your children with what you call, "the secular agenda." In reality, I'm pretty far from secular myself.

If you're truly paranoid about the idea of running into a person who you assume, rightly or wrongly, might be engaging in same-sex sexuality in some public area, I suggest you move. You're right about one thing, you are outnumbered here.

Tuesday, July 26, 2011

Your're 21!

Today is the 21st anniversary of the Americans with Disabilities Act (ADA). When it passed, we had a dance at the disability summer camp where I got to be normal teenage girl for two weeks per summer, complete with pretty dress, jewelry, and boyfriend I foolishly thought I was going marry. We met at camp. And as for marrying him, which looking back I’m really glad I didn’t do, I was thirteen, what can I say.

I remember that night so clearly. The counselors made a construction paper American flag and put a yellow wheelchair on it. I, being a proud American, thought that its passage met that I could do anything I wanted. Just like the American Dream, I was told to (and to degree still do) believe in.

But I grew up and found the world not as accepting as the ADA promised. Laws still existed that kept me from working without losing needed benefits (thankfully that trend seems to be changing). Employers assumed that I get sick and miss work a lot. , which met they didn’t want to hire me. This is in spite of the fact that I don’t get sick more than the average person. It’s true that I have immune system issues, but I manage that by not being around communicably sick people (if I can help it), getting a flu shot, taking my meds, and living on OJ. I also have recently started going to the gym and being more mindful of the food I eat, which feels like its helping.

But there are still issues. Bus lifts don’t always work. Many spaces I would like to enter, especially local businesses and revolutionary spaces, are inaccessible. For example, a local restaurant that I friend of mine owns which I know has a portable ramp became momentarily inaccessible when the person he hired to run the business while he went on vacation couldn’t locate the ramp.

Public transit doesn’t run everywhere. I live in Hampshire Country, but it’s almost impossible for me to get to Franklin County and get around. This means I miss many cool, literary events, which just might help my freelance career.

Every summer, the Pioneer Valley Transit Authority (my local bus service) tries to tell me that I can’t go out after 7pm on weekdays because the late bus is canceled. This ist true and I win the argument every time, but you would think they’d write it down.

I need to move into a busier environment with more bus service and roll-ability to activities, so I can stop straining my freelancer/public assistance benefit budget in an effort to pay a $300 paratransit bill (each one way time cost between $2.50 and $3.50). If I lived on a better bus route, I’d simply get a monthly bus pass and pay $30 a month to ride the regular bus. They are all accessible here.

But affordable, accessible housing is impossible to find. My mom will cosign for an
apartment, but it’s big risk to her as I live on about $900 a month total and rent would be about $700. I need to spend a good deal of money finding things and going to event to write about and sell my self-published poetry books. What if something goes wrong one month? Then my mom would end up paying my rent and I would never hear the end of it.

The last issue of access I would like to talk about in this blog is the issue of
access to marriage. Being bisexual, I celebrated same-sex marriage equity being declared in NY, but my smart advocate friend and native New Yorker, Julie Maury, reminded me that if most people with disabilities (PWD_ marry. They lose some, if not all, of their benefits. All this does is create unhealthy dynamics in their marriage and them more prone to partner abuse, as which as we are already as PWD (especially those in mixed ability relationships) are already more likely to endure because it makes you economically dependent. Who thinks that’s a good idea?
There a thousand more things, I could write about. the United States doesn’t have a nationwide personal attendant services and supports program, but funding nursing homes is mandated. Many PWD leave family, friends and We have the only Global North country without some form of universal healthcare.

But still I raise my glass to the ADA. “You’re 21! Let me buy you a daiquiri.” All PWD in America are better for your passage!!

Sunday, May 15, 2011

Illness ponderings...

My Temporarily Able Bodied(TAB)housemate, annoys me immensely. She's so smart, but would rather be lazy and do nothing except work for me (because it provides housing, utilities, and money for whatever else she spends it on) and play video games.

I struggle daily, hourly, minute wise to be productive. I struggle against catching a cold that saps my energies (as I have know). I spend approximately 90% of the extra income I receive on making the world better, on getting myself to and from various actions and events.

I spend a lot of my time helping her transition from male to female. We have a project and I am writing poetry about that in the hope that someone will grant us funds to enable her to go through surgery. In truth, I wonder if being here for her and helping her with things is in fact doing the opposite of supporting her. If she might, in fact, become more functional if I stopped providing her shelter and made function on her own.

She's a good employee and a good friend. I'd miss her. She'd be mad at me for a good long while, I know. But perhaps me and too many people in her life have acted like Kate Keller (Helen Keller's mother) rather than Annie Sullivan (Helen's Keller's teacher)who insisted that the child reach for things rather than simply be given them as a matter of course. By using using her services and providing housing/most basic needs, am I being fair to her?

This is what I am pondering as I am sick.

Wednesday, March 2, 2011

Help fund the Matthew Shepard/Laura Hershey Memorial Book Project

Dear Fellow activists, Writers, and Whoever may read this:

I am a poet from Western Mass who happens to also be a women with a disability. My friend and mentor Laura Hershey died suddenly (at least to me) the Friday after Thanksgiving. Laura was living in Colorado at the time. Her memorial service is scheduled for the 20th.

I, of course, planned on going. I also figured while I'm there I could visit the headquarters of ADAPT, an awesome organization dedicated to ending the institutional bias that plagues and threatens the daily lives of so many people with disabilities.

Then I heard fellow, queer woman, poet Leslea Newman speak about her visit to the Matthew Shepard fence. Upon looking at a map, I discovered that Laramie, WY is only 2 hours away from Denver.

Being a poet by trade myself, it seemed to me that there was a universal deep reason that the spot Matthew made infamous was located so close to my dear friend's memorial service. Laura, it seemed to me, was telling me to do something more with my visit than mourn her. I planned to visit ADAPT as scheduled and also to visit the Matthew Shepard fence as Leslea had done.

The loss of these two openly queer lights in world affected my world in ways to were unforgettable. Laura’s battle to live independently with her partner and daughter, her bringing of her entire queer, disabled, poet self to all events at all times, and her success at getting off SSI (a task I’m still working on), deeply influenced my life. When people asked me who I wanted to be like when I got older, I’d point at Laura and say, “her!”

When Matthew Shepard died, I was a 22-year-old who had recently graduated college. I was also a little, queer, chick in a wheelchair who lived in a somewhat backward area of Pennsylvania. I didn’t leave the house for 6 weeks. Until I realized that this was a disservice to the young martyr I’d never met.

What I need to make this project happen:

2 Airline tickets
(one for me, one for my personal care assistant- the person who helps me use the bathroom, get dressed and undressed, get in and out of my wheelchair)- approx $300
1 wheelchair van for use in Laramie WY- $100 per day
1 place to sleep in Laramie, WY- have a no step house and are welling to have me stay, or want to feed me, or lend me your van, please e-mail. The Project will be in your debt!
approx- $200
Total budget: $1200 (approx)

I am committed to seeing this book happen. I will have the whole manuscript edited by the Phillbrick Poetry Prize deadline of October 15th 2011. If Phillbrick doesn’t want it, someone will. If not, I’ll self-publish. If you give $10, you'll get a free book when this project publishes.

Thanks so much!

Martina Robinson

Wednesday, February 16, 2011

The Housing Blues

I live in a crummy apartment complex. It's subsidized, allows me to have separate sleeping quarters from my assistant (always important when one might recreate- blush, blush, wink, wink), and has all my stuff on the wall.

Bur I live on a bad bus route and must be home by 10:30 weeknights and 10pm on Saturday, the only day I can stay out late is Sunday,when the buses run until 11:30pm.

I keep trying to move, but nowhere is available and wheelchair accessible. This very morning, someone called and said an apartment was available. But then thety called back and said I didn't have the needed voucher. So the apartment vanished in a poof!

I realize I'm lucky to have house and be living free and not in some Godforsaken nursing home! I'm lucky to live in state with good personal assistance services, but is it too much to ask that I be allowed to go out until midnight maybe? Is it too ask that I not have spend all my hard earned writing money on van service, because getting around on the bus is impossible. If I lived on a good bus route I'd pay $18 to travel the whole month.

This day of dashed hopes that I didn't know I had has put me a bad mood!

Monday, January 10, 2011

PWD in Taipei take on McDonalds!

As many of you know, I'm one proud ADAPT member. Today, I'm especially proud of these folks; members of the Taipei, Taiwan ADAPT chapter. According to the reports I'm getting on the NationalAdapt Freeourpeople facebook page ADAPTers refused food and assistance and were covered by 8 media outlets. Here is a google translated
article about the action. It sounds a little funny, but you can get the idea!

ADAPT's Sandie Yi and Rahnee Patrick did a training with the Taipei chapter before Christmas. Ms. Yi, who is a native of Taiwan, finished the second part of the training today which resulted in today's action, held at a local McDonald's, in which members demanded increased access. One disgruntled customer yelled "idiot" as he tried to push a wheelchair user out of the way. "When one of our people tried to protect the wheelchair user (papa), the man got pissed off and grabbed our people. Then, it was quite a push and pull. Gladly, no one was hurt." Ms. Yi, added in an e-mail account.

What can American PWD's and allies do to support their colleagues overseas? Spend a moment tomorrow contacting McDonalds. You can reach James Skinner by Phone at 630.623.3000 or fax: 630.623.5004 at US McDonalds and demand Taipei McD's be made wheelchair accessible!