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!!

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.

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!

Sincerely,
Martina Robinson

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!

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!

The Red Pill

I'm still convinced that The Matrix was one of the best movies ever made.Think about it, every time we know something the powers that be would rather us not know. We take the red pill. I take the red pill a lot. Including times I'd rather not.

For example, Cherry Coke is my favorite soft drink in the world, but when I found out that Coke was actually hiring death squads to murder union organizers I had to give it up because I simply couldn't handle the idea that I was helping to pay for such people. How about you? What has taking red pill caused you to give up?

Joey is free and Other News from Tuesday

This picture made me happy. We took over and took on HUD. Two people were arrested, both walking. Apparently, the DC police think that disabled people can't make decisions by themselves. Does the word "DUH" (which is HUD backwards) mean anything to them?

We parked in front of the doors as per usual, but the blocked the street and garages, too. I blockaded a garage ramp. Then they got HUD rent-a-cops to stand between us and the on ramp. You see, the knew we wouldn't hurt actual flesh and blood beings, even if they were cops. But plenty of us, me included, was still pissed about the deceit from yesterday and therefore, absolutely willing to make them drag us and our heavy power chairs away. I think they may have hurt themselves, but as my assistant says "Idiocy should hurt." I'm quite sure some of those men are going to have sore places where they never knew they had muscles.

Eventually they pulled me away, but I give it a good try. Then I held up a sign and chanted for awhile. Then Secretary Donovan give us a meeting and we left, as promised.

Onward and upward, a new Wednesday activity looms. We usually go to the Hill on Wednesdays, but not apparently tomorrow. Exciting! Exciting!