Disability Rights and Other Matters of Justice

Disability essay I wrote for AARP

2011-10-19T18:27:00.000-07:00

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.

Big Girl

2011-08-29T08:36:00.000-07:00

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.

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

2011-08-28T23:02:00.000-07:00

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.

Your're 21!

2011-07-26T20:54:00.000-07:00

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...

2011-05-15T17:15:00.000-07:00

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

2011-03-02T17:46:00.000-08:00

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

2011-02-16T12:41:00.000-08:00

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!

2011-01-10T16:17:00.000-08:00

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!

So

The Red Pill

2010-12-13T16:50:00.000-08:00

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

2010-09-21T18:50:00.000-07:00

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!

ADAPT, scenes from a Monday

2010-09-20T19:23:00.000-07:00

I meant to write yesterday when I got in, but I was just to exhausted. I had to write my examiner column first. They are the people paying me to be here after all. HHowever, If I actually used the words I wanted to (and probably will slightly use) this in entry, Examiner would fire me tomorrow. I spent part of my day blockading a white house gate with about 40 adapters, mostly women. I think there were only two men present on that gate.

In case you don't realize it, arresting women in wheelchairs is a big pain for the DC police, because if they have to help us go to the bathroom, which they legally do, it's not just "a point and click operation", as my assistant calls it, as it is with men. You can't just grab it, put into a cup, dispose of said full cup, put it back and be done. So I'm sure they were not thrilled at the idea of arresting 38 women. So they bribed us.

One of the Texas PCAs. whose name is Joey, got himself arrested when he was running in the front of a group of stampeding wheelchair users running for the White House gate. he crashed with a bicycle and they threw him to the ground and beat him up slightly. Happily. it was mostly minor injuries (bruises and scraps) but he was charged with assaulting an officer, which makes no sense to me. At least, they said he was going to be charged with that.

However, they said that if we let them have the middle gate where we were located, they would only charge joey with a misdemeanor and release him tonight. I'm not making this up, I actually heard them say it. as the dc police have been pretty much straight up with ADAPT over the years, we backed off in Joey's best interest. we got tot he hotel tonight, all the while I'm expecting to see Joey at some point, as is everyone else. Imagine my surprise when I run into my color leader friends Anita and Dawn in the lobby after sign making and discover that not only is Joey not with us, he's in jail with regular criminals in the Washington DC lockup.

What was that thing Ricky Ricardo used to say? "Lucy, you got some splainin to do!" as far as i'm concerned, the DC police have some splainin to do tomorrow. And ADAPT doesn't tend to be as nice as Ricky Ricardo.

i think that they'll be really unhappy when they discover that ADAPTERers don't take them at their word anymore. Anyone who's dealt with us realizes this is just a bad move on our opponents' part. if you lie to my face, I'm likely to never speak to you again, never believe a word you say, and or plot vengeance against you. If you lie to a bunch of adapt women, we're going to spend hours plotting ways to make your life difficult. as my assistant said, who agreed to help put stranded Texans to bed after i accidentally volunteered her for it, "someone just screwed up really badly".

Before this event, my opinion of the DC police was, "they're cops but they're not assholes!" After today, remove the not. When will bureaucracy learn that if you lie to ADAPT, especially if you lie to ADAPT women, we'll find a way to get you. I hope that whatever they promise tomorrow comes in writing with a bunch of signatures. I don't intend to believe it otherwise.

Word of warning to bureaucrats, ADAPT women may not be able to move in ways you consider normal. Some of us can't even clean ourselves post bathroom usage. But we remember real good for a real long time.

Either/Or: an activist ponders

2010-07-04T19:53:00.000-07:00

Today, I'm a crossroads. I'm stuck in the middle between saying "Yay!" to Google for paying the unfair tax to LGBT employees who must pay a tax on domestic partner benefits. Here is the link.

At the same time I'm upset that Google has not opted to create a special doodle, drawing of it's logo, in honor of the Americans with Disabilities Act anniversary on July 26th. If you want to object read my Examiner article or join this Facebook group.

So this activist, who both bisexual and disabled proudly is caught between saying "Yay!" and "Boo!" I have decided that this is okay. I'm still hoping that Google does the right thing and honor the Americans with Disabilities Act. Come on Google! Honor your progressive values.

Said...

2010-06-27T20:34:00.000-07:00

I always try to teach able-bodied people that disabled people's lives are able to be lived joyously. That we can participate in society and have value in the world. This able-bodied person I value (even though we have had at times major issues, I would be amazingly sad if he died, because I believe- and this took me awhile- that his heart's in the right place although his judgment is sometimes questionable to put it politely).

He and I were talking briefly when he came to pick up my PCA at the end of her shift, as he is her roommate. He says, "if I can't take care of myself I'm going to drop a lot of ecstasy and jump out an airplane with a parachute."

I said, "I'm not going to say anything, just sit here and be quietly alarmed."

He asked, "Why?"

I told him, "To do as you purpose says disabled people can't have successful lives. I hope you would overcome that." I felt truly offended but was trying not to act as such, because I didn't feel like fighting or having it be a big deal.

He said, "I'm not going to deal with being unable to do what I've been able to do for 30 plus years." I let that go, but I was alarmed.

If this person who lived in my house when he had no shelter thought my life was so unworthy that he would kill himself rather than endure it, perhaps I'm not as good at conveying my "all life is fine and worthy" message as I thought.

I know my friend didn't mean to cast aspersions at my life and proud affiliation with disability culture. However, it felt like that. Is this why it's so easy for able-bodied people to follow the logic of "Better died than defective!" Where had I failed to influence this person? What could have done differently. Just my thoughts!

Crisis of Conscience

2010-05-18T18:33:00.000-07:00

Note: Before this entry is published I’m going to talk to all the people involved and I’m also going to change all the names. I don’t usually do this, but when dealing with minors you can’t be too careful.

This entry has been rolling around in my mind for a few weeks. On May first, I went to Pride. Those of you who know me know that I always go and have a booth there. This year, I was also on a mission to find teenage appropriate clothes for someone with two moms who is not embarrassed about it. This is because two of my beloved activist friends have adopted a 14-year-old girl. One of my greatest joys in life of late has been buying and sending things to Jane. It’s lovely being a virtual auntie. You get to spoil someone else’s kid and you don’t even have to babysit.

When I saw the teenagers from Children of Lesbians and Gays Everywhere (COLAGE) sitting across from me selling t-shirts, I thought that I would get her one. Knowing, as I do, how much she seems to like bright colors and rainbows, the white rainbow t-shirt that said ‘I LOVE MY FAMILY’ with a heart where love should be seemed ideal from my ultra-femme honorary niece. However, when I had someone take over my table so I could go over there, they had sold out of the shirt I had wanted. All that remained was a gray shirt with orange writing that said ‘YOU KNOW WHAT’S SO GAY? MY FAMILY.’

Being bisexual and in a wheelchair, I’ve encountered my share of bigots because I wear activist t-shirts and have liberation stickers on my wheelchair. For a moment, I considered not buying this very obvious shirt. The last thing I would ever want is for some middle school bully to harm Jane. I sat there for several minutes while the teenager who showed me the shirt waited expectantly for me to do something, namely take out my wallet. In the end, I rebuked myself for having these giving in sort of thoughts. Jane lives in a nice place with progressive people and young people today are much more accepting than when I was growing up. I was sure she would have no problems. Moreover, I thought this was much more of a Pride festival shirt than a wearing-to-school-on-a-regular-basis shirt.

I put the shirt in the mail the next day along with a shirt I got her from ADAPT, a disability rights group I belong to. About one week later, I got a message from one of her moms saying the package had arrived and not to worry. She was not mad at me despite the impression I may have gotten from her Facebook status. I hadn’t checked Helen’s Facebook status that day, so I didn’t even know what she was talking about. Of course, the curious person I am, I went and checked immediately.

Apparently, Jane had insisted on wearing the gay family shirt to school. Helen, being a protective mom, was concerned about people teasing her. But anyone who knows Jane will tell you that once she gets her mind set on something, good luck getting her to change it. Finally, the pair reached a compromise. Jane could wear the shirt I sent, but she had to wear another shirt over it. Now that Jane was successfully off at school, Helen confessed to feeling a little guilty. She said “Have I betrayed my community, my family, myelf?”

I felt amazingly guilty at causing my friend to go through all those emotions merely because I bought her daughter a gift. It really made me think. On the one hand, I was very proud of Jane for not being afraid of what people would say and being proud of who she was—the daughter of two awesome lesbian activists who loved her to bits. On the other hand, I was afraid as her mom was that some hotheaded teenage bigot might give her a bloody nose or something.

This made me think about when I have my own kids in the future. Will I be nervous if they want to wear a shirt saying they have two moms in my case is, as far as I can estimate, is about a 70% likelihood. Will I try to shelter them from the misguided bigots of the world? Is this even good for them? What does my sexual orientation have to do with their growing up in the first place?

Of course, I don’t need to figure any of this out right now. At the moment, I’m so hopelessly single, it’s pathetic. There is no partner. Therefore, there will be no kids. My mother was a single mother and I respect her for it. A lot of my friends are single mothers, so please don’t think I’m bashing single motherhood. It’s just not for me.

In the end, I’m glad, in a way, that this incident happened. It gave me some clarity around issues I fully expect to struggle with when I become a mother. Although, I also hope that the world will become more accepting by then. Somehow, though, I’m sure we’ll have a bit to go. I think that’s always going to be the case.

WhtyLocal Elections Matter

2010-05-17T15:41:00.000-07:00

I voted today. It was local election. We visited for two Selectman, a housing authority member, and a few board of health members. I know it was only a town election, but town elections ensure that Belchertown pays its community transit fees, has good housing programs, and a really good school system. Therefore, town elections are vital to every citizen’s well-being.

Sadly, not every member of my community sees it that way. I voted at just past 12:30. According to the election worker, I was voter 115 in my precinct of about 2,300! That’s a 20% return My good friend Ken Elstein, who is even more of a political animal than I am, who was at the polls today garnering support for Dave Sullivan, a Democrat who’s running for District Attorney told me there have been years where the total voter turnout was 800 for the entire town!

I’m fanatical about voting. While I will allow a lot of political divergence between myself and any romantic partner I have, I can’t imagine myself being happily attached to a committed “non-voter”. Bring a disabled, person of color who happens to be a woman, too many people have tried to separate me from that ballot box and democracy. I’ve never, in my life, missed an election in which I was eligible to vote. I don’t plan to, either. It just isn’t part of my character.

By the time I post this, it will be about 6:45. If you live in Belchertown, you’ll have 1 hour an 15 minutes to do your civic duty at the high school at 142 Springfield Road. If you don’t live here, make sure you vote in your own local election. Democracy, even just local Democracy, doesn’t just ask us to participate everyday. Election days are special and we should rejoice and participate therein.

Mother's Day Thoughts and a Bit of Activism

2010-05-06T19:51:00.000-07:00

It’s nearly Mother’s Day and we are all getting numerous e-mails about ways to honor our moms from flowers, to memberships in various clubs, to gifts of electronics, clothes, or what not. I, myself, bought my mom a Mother’s a present in December (when the after-Christmas sales were on). I am writing here to discourage Mother’s Day presents or Mom honoring. Moms deserve it!

But I’m disturbed by one site and one e-mail I received today. The site is an elder care residential locator website. Nowhere on the site is home care mentioned, even through studies indicate that most moms would prefer to get daily living activity support (DLAS) in their homes. All that is featured there are sugarcoated stories of institutional living and sweet pictures of adult children and elderly parents.

When my mom gets old enough to need DLAS, she’ll have support services in her own home, as I do now. Hopefully, the Community Choice Act (CCA) will be passed by then, which means she will be able to get services wherever she wants. If not, she’ll live with me until she can get her own services in Massachusetts. This situation will not please either one of us. We are very different people, with very different ideas and ideals. I don’t see that changes as either one of us ages. If this situation occurs, it will become priority one on my personal list to get my moved into her own house with services and out of my personal space.

I’ll be a Daughter from Hell to MassHealth, let me assure you. In my mind, the aforementioned organization (that doesn’t exist yet) grew out the Mother’s from Hell (a group of radical activist moms who tirelessly advocate for their children with disabilities). In my mind, the Daughters are the adult children of such moms who advocate for their moms to get independent living services as they age. One hand washing the other across generations.

In e-mail that disturbed me was from the lovely people at Care 2. They send daily e-mail exhorting people to undertake certain electronically based political action. I’m on their list. Today people were asked to send an e-mail to a “homebound, hungry mom”. I’m not discouraging community interaction with such moms in anyway, but I do have a question. If I undertaken such action, will it cause anyone to eat? The petition doesn’t tell me what good I'll do.

So, why should I, who have a busy life, the action that doesn’t seem to have positive outcome. Instead of encouraging readers to write to these hungry moms, why aren’t they advocating that readers prepare meals for their neighbors or harass their Congress people to increase funds to elder feeding programs or for more homecare services, as homecare workers could make food for these women daily and
eliminate the problem?

Just a few political thoughts from a non-mom, although I do hope to be one someday, as Mother’s Day nears.

Food Justice for EBT users!

2010-05-05T21:28:00.001-07:00

re you a food stamp user? Did you know some farmers’ markets take EBT? They do. Better yet, you can double your food stamp benefits if you shop at the markets! Just give the market registrar your card (you can ask where they are) and they will give you tokens for a value of $2.50.

You can buy vegetables, meats, breads, or even vegetable plants! In Northampton yesterday, I brought a small block of feta cheese, a small bag of salad (good for 4-5 bowls), and a dozen organic eggs for $8.75 in benefits. Not bad, especially when I plan to buy big groceries (including ethical meat) next week when I get another installment of food stamps. I'll have a very happy belly on Tuesday. I'm thinking of spending $50 in tokens, that's $100 at the market, yay! Maybe I'll just get $30, because I don't want freezer burn, as my assistant pointed out.

Find out farmer’s markets in you’re area that take EBT, by clicking here. The website says it’s only for Western Massachusetts, but you can find any city by changing the town search parameters on the site. So, find your local participating market and eat some local, fresh food this season!

This news made me so happy. I love farmers markets, but can't always go because of the food stamp issue. This is easy access to fresh food. My body is screaming, "Oh Yay!"

ADAPT on Wednesday

2010-04-28T16:57:00.000-07:00

After learning that implementing the Community Choice Act would only cost middle class taxpayers $6.07 annually according to a Harris Poll that was released today, I am trying very hard (and at the moment succeding)to not become livid. For the lack of $6.07 a year, thousands of Americans who have committed no crimes are incarcerated in institutions. What can you buy for $6.07? McDonald's? Some potato chips? A 1/3 of one month's worth of basic cable? Not much! In fact, I have two story ideas planned around this $6.07, one is I'm going to look for change on the street and add it to a change jar until it comes up to $6.07, then I'm going to write about how long it took me to find it. Secondly, I will go to various stores and see what $6.07 affords me. I don't think it will be much or anything very good for me.

The other exciting thing that happened today was that stan Bangenstos of OCR and DOJ came to his pre-arranged meeting as promised. It's amazing what you get when you simply show up outside someone's office with 500 people! He seems really nice and committed to his job, but we'll see what we what see. I don't trust most politicians. I know that sounds aweful, but it's true. He listened to everybody's story.

the most poignant story to me was Joey's from Indiana. It could have been mine. In fact, it was. He also had to move states unwillingly because of service needs. He asked Mr. Bangenstos if he would ever be able to go back home. Mr. Bangenstos said it was the right of every American to live wherever they want to and that does not change because they are disabled. I hope/believe that maybe this man might be the one who lets me move back home and still live on my own. I have no desire to live with my parents and indeed I won't do that again no matter what happens. But Philly is nice, so is Pittsburgh. I could move there, no problem because I'd close enough to visit, but far enough away to not have my parents in my business.

Now I'm off to party. Work's done, now it's time for fun. I'll miss everyone here as always. I can't believe I won't see them until September. Back to Massachusetts and being by myself. I refuse to feel sorry for myself. I won't let my situation steal this evening.

Tuesday Report

2010-04-27T17:48:00.000-07:00

Flushed from our 2-0 day yesterday, I didn't even mind (much) getting up at 3:30 in the morning. Hell, if justice comes one day sooner because I get up at 3:30 in the morning, I'll do it for a year. I had no idea where we were going. Unless you're one of the elite few, you never know, although experiences people have a guess or two as we march familiar routes. But in my 15 years of involvement with ADAPT, we've never marched to the Hilton Washington, but we did today because Speaker Pelosi was there. We wanted to ask her why she didn't support the Community Choice Act (CCA). Apparently, there was even a group of women with disabilities who wanted to especially try to meet with her because she has always said that she is for women's issues, but not co-sponsoring the CCA helps neither disabled women or women who are caregivers. It leaves both groups high and dry. For myself, I thought Nancy was going to be a better speaker than she is turning out to be. I am disappointed as I'm sure most of my gender is in her performance thus far and not just on this issue.

We began the day at 1t 5:30am, hoping we could intercept Nancy en route to speaking at the American Hospital Association annual conference. But according to reports I have gotten, I wasn't in the area to see the Speaker, so I can't swear that it happened. Pelosi fled when she saw ADAPT assembled outside the Hilton to meet her. May I ask what the Speaker of the House who has armed protection 24 hours a day has to fear from 500+ non-violent mostly disabled protesters. I've been an ADAPT for almost as long as I've been an adult. We are no threat to anybody.

Sam Donaldson came to the event as well. He was much more helpful than Nancy. He seemed interested in what we had to say and even gave us Speaker Pelosi's office number. Not that I'm telling you what to do, but should you want to contact Pelosi to inquire as to why she ran away from non-violent protesters who were merely inquiring into her reasoning and decision-making, feel free to do so. Here is the number 202.225.4965. If you call, thank you in advance.

I'm glad that all we're doing tomorrow is going to Capitol hill and having a press conference and meeting. I honestly don't think my poor body could handle a 3:30am wake-up. Although, as I've said I will if I have to. I'm looking forward as always to the party which commemorates the end of of every action. But I'm said that I'll be going back home to Massachusetts where I have no one to discuss this work with.

Monday with ADAPT

2010-04-26T17:29:00.000-07:00

I was really hoping that the rain would hold off until we returned to the hotel. No such luck! It always rains when we're in D.C. My mother says it's because God is weeping that we still have to come here. If that's the case, God should make it rain on the bureaucrats heads, not ours.

Our first stop was the Department of Justice (D.O.J.). For those of you who don't know, the DOJ is responsible for the enforcing the Olmstead decision which said that people with disabilities have the right to receive services in the most integrated setting that is safe. With all the state budget cuts, enforcing Olmstead is difficult because community-based settings are optional whereas anyone who wants to go into a nursing home has the right to do so as long as they meet the requirements. And there are no waiting lists. I have one question: Why would you make an entitlement no one wants instead of paying for the cheaper option that people want? Only in Washington and various state capitals. The D.O.J. big wigs agreed to meet with us here at the hotel on Wednesday at 4pm. Go us!

After the victory at the D.O.J., we stopped in a park to have our traditional McDonald's lunch. there were no fries this time and I'm kind of glad about that because i just learned that McDonald's fries don't mold after 12 weeks. Don't believe me watch the special features on the Supersize Me DVD. But I would have eaten them anyway, as I was so hungry.

Finding a place to pee when ADAPT is out on an action has always been difficult, especially when you're in a wheelchair. A lot of people wear Depends so they don't have to worry about this issue. I can't because I'm allergic to the plastic. When I get back, I'm going to have my friend Laura make me some cloth Depend-like garments that I can use for these events.

Then what happened to me today won't happen again. I was going to use a Port-A-John at the park we stopped at, but the wheelchair-accessible ones were padlocked. WTF? Finally, we just overtook the first-floor bathroom in the Air and Space museum which is very small by the way. I do not recommend it. I waited in line for about a 30-45min for the bathroom. When I came back, everyone had left. Luckily, my roommate Cheryl called my cell phone earlier in the week, so I had her number.

Shaniek and I made it to the National Governors' Association (NGA) after 25 minutes of walking, including misdirection by a gentleman whose heart was in the right place. I'm happy to say my chair held up over the grass. I've been to the NGA before, but I'd forgotten where it was.

The NGA is the organization to which every governor has membership. They have a lot of power, but you wouldn't know this because no one ever hears about them. ADAPT has been negotiating with the NGA for years. Today, they finally agreed to contact ADAPT leadership in ten days and discuss including community-based services as part of their best practices model which many states follow.

As happy as I was at this second victory, the score by my count is ADAPT:2 institutional bias:0. It was hard for me to be at the NGA because I kept thinking of people I love who aren't here anymore. I especially missed Buddy who was an ancient man from Philly with a horn he blew with his foot. I've never been to an action without him and up until I learned of his death abotu 3 weeks ago, I must confess i thought he was immortal. He lived a good life, mostly free of institutions even in the end. But it doesn't make it any easier. I still miss him. I really feel that the only time it's safe for me to miss people is when I'm here. Everyone else understands. These people were their second family too. But then I remember there are battles to be won and my friends wouldn't expect me to stop fighting to mourn them, so I do what every good soldier does and soldier on.

Sunday with ADAPT

2010-04-25T19:21:00.000-07:00

I went to two workshops today and learned a lot. The first is that Obama is not as horrible on the community based service front as I had thought. He still refuses to make community services an entitlement as nursing homes are.

But their are some good stop gap measures as we work toward that goal. First states can get a 6% increase in their federal match grant for Federal Medical Assistance Percentage (FMAP), if they agree to support Community First Choice (an Obama Initiative, in health care reform, which is focused on getting and keeping people out of nursing homes). Currently, Massachusetts plays 50% of all bills for Medicaid recipients, with the federal government picking up the other half. That would become a 44%/56% split if this program were implemented. The change would be in effect forever as long as Massachusetts kept being a member in good standing of Community First Choice.

Given the fact that people in the community have better, more productive lives if Massachusetts elects not to join, I will have harsh words with my elected officials me tell you. I encourage others to do the same and post a comment with your results.

Secondly, although I'm still unclear on the details, is federal long term care insurance opt in. For approximately, $100 a month people could pay into a program which would allow them to get a check in the mail for $75 a day forever to pay for their longterm care or other independence needs. As long as you work between 8 and 20 quarters and pay the premiums, you're eligible. Better yet, the money will not count against Medicaid means testing. You can even be on a Medicaid waiver and receive it. You can also get it if you're self employed. The program will unveil in October 2011. Where do I go to say, "sign me up, Scotty?"

The second workshop focused on keeping people out of institutions through complaints to the Office of Civil Rights (OCR) Examples of possible complaints included: my home care agency doesn’t send me someone who speaks English fluently and I can’t communicate with them, I can’t set my own hours because my state doesn’t allow me to consumer direct my care anymore, and I’m not allowed to being my attendant to the hospital with me to name a few. I plan to write one about the lack of ability to save hours in my home care services (which is really harmful at times), and hospital access issues, as well as my chair which always breaks. OCR will get sick of hearing from me. I say (grinning evilly) "good, good."

After that, we left for the Fun Run. I did my 20 laps. It was hard at times because I so vividly remembered rolling those streets with Buddy, Karin, and other fallen comrades. I few times tears threatened to roll down but I kept them in check and enjoyed the sun. It threatened to rain, but only a few drops fell. I think said fallen comrades had a word with the Lord on our behalf.

I ate at Quiznos. Perfect, Martina sized portions for $3.07! I came back and sold two books. I won't make a fortune, but it's good to make a sale. I've designated Shaniek to be in charge of selling my stuff should I go to jail tomorrow. I'm not opposed to going to jail, especially after the government has banned 12 of my colleagues from actually entering Capitol grounds because they got arrested by John McCain's office in 2008. They're still here, determined to help out in whatever way they can. I am mad on their behalf. This sounds very Stalinist to me. I thought we didn't do this whole thing in America--banning non-violent protesters from Capitol grounds they're paying for. WTF!?

But of course, if they just give us what we want, we will just go away peacefully. You would think they would have figured this out by now. Aren't they making an average of $80,000. More tomorrow. Now, my tired eyes are going to bed.

Hope or ADAPT Saturday

2010-04-24T20:31:00.000-07:00

Today was the first day I arrived in DC with something to do. I had two other plans (a War Tax Resistance rally and Youth Pride DC, but both were cancelled). I’m mad that I left my grandmother’s birthday celebration in Atlantic City at the crack on dawn Friday at get to said, non-existent events!

But I met two awesome, able-bodied men .Te first was Steve, a Quaker from DC, who lent me the money to crash at a hotel after my event and therefore event related housing went bye-bye Saturday night.The second was Jim, a space physicist who shared my table at the bar. He asked why we were there. I told him. He was amazed. I think we have a new ally. He was especially moved when I told him how I had to move from Pennsylvania (where my heart still is, truth be known) to Massachusetts just to get the services to live on my own. He plans to call his media friends and he also gave ADAPT $50! I turned it over to Nancy Salandra, who is our Fun Run Organizer right away.

If more able-bodied men behaved like this, I’d have a lot more able-bodied male friends. Tomorrow starts the action officially with workshops and the Fun Run. Stay tuned!

Prelude

2010-04-24T20:04:00.000-07:00

The reason this blog came into existance today is that my other, long standing disability rights blog went bye-bye with no warning and I really went to be a part of ADAPT's blog swarm this time. My goal will be to write about disability rights, the life of people with disabilities (I tend to say disabled people or use reclaimed, insider words like gimp or crip; disabled folks I know have reclaimed it the way some LGBT folks have reclaimed queer). Note to members of dominant communities: don't use insider language without asking first. It's presumptuous and overly familiar.

My goal here will be to talk about disability rights in general, as well as how disability rights impacts other social justice struggles. I hope that this blog will get people from various stuggles networking and talking. As Reverend Dr. Martin Luther King said, "the moral arc of the universe may be wide, but it bends towards justice." May this blog and my work over all, help it bend quicker!