Blessings

On a Thursday evening, I left therapy and got on the nearest train. As a person with cerebral palsy, it takes me a good deal of effort, and sometimes pain, to walk from one place to the other. New York City is brutal for someone who has difficulty walking. The subways generally do not have elevators, the expanses from one train to the other are long, and people get frustrated with someone who is slow. I need to ascend the stairs one at a time due to a bad knee.

I have explored getting “access-a-ride,” the service for people with disabilities. However, in order to use this service, I would need to call two days ahead of time and a have a two-hour window for pick up. Not only is the service impractical, it’s disrespectful. The system implies that a person who needs the ride does not have a job or any other timely commitment, It’s a reflection of how American society views people with disabilities in general.

I am not that person, the fictional person without responsibilities. I am disabled, yes. I have a speech impediment and move slowly and with difficulty. I am also a busy mother. I teach an adjunct class. I am four years into writing a biography. I am currently working with a lawyer on putting together a non-profit for poets with disabilities. I write essays. I am currently writing my fourth book of poetry. I am on my condo board. And, this is just the tip of the so-called iceberg. In other words, I’m a typical New Yorker. Distracted, busy, sometimes in my own head.

On Thursday, which could be any given Thursday, here was what was inside my head; I left therapy at 5, fifteen minutes late. I had to be at a condo board meeting at 6:30. I planned to get to my neighborhood and meet my son for dinner and go to the meeting in the expanse of an hour and half. In the process, I bent over my phone to send an email at 14^th street and didn’t notice that I had gotten on the wrong train. When I got on the train, I started doing the crossword puzzle. At 59^th, I remarked to myself that I had forgotten that stop was on this route. In the 70s, I realized the train was absolutely not going to Queens. I got off at the Natural History Museum. Slogged down another long flight of stairs and started the journey in reverse.

When I got to Queens to transfer to the train to Brooklyn, it was 6:15. I realized that I would not be able to meet my son for dinner before the condo meeting. There is a long hallway between trains. As I walked up the stairs, I was worrying about my son’s late dinner, arrangements I had to make for a summer trip, and the condo meeting.

I’m a very open person, so sometimes I stop and give directions to people or say hello. I watched this very clean-cut, young ordinary man walk ahead of me. Then, he circled back and came up to me. I stopped because I thought he needed directions of something. He told me “I don’t know if it’s ok to say this.” I thought he was going to ask me out on a date. It was very awkward. I said, “What is it?” I really wanted him to hurry and he was hesitating. He told me, ‘I want to know if I could pray for you to heal your legs.” He pointed to my legs. I was completely taken aback. I fumbled. I told him, “I am happy the way I am.” He told me, “It’s not about you being happy. It’s about curing your legs.” It seemed as if he wanted to do a “healing” right then and there. He told me, “It will only take a minute. You can say ‘no’ if you want.” I said, “No” very firmly, and he walked off. And I walked off.

But that wasn’t quite the end of it. I wanted to be nice because he was obviously very awkward and well-intended.

I can imagine many, many abled-bodied people reading this won’t understand what the fuss is all about. Even though if one isn’t the kind of religious person that believes God can magically “cure” a person through prayer, they will probably attests, “Hey, this guy meant well.” But what he said was not okay. It is not okay to stop a busy stranger and tell them that there is something wrong with them and you can fix it. It feels like a violation. It feels like and assault. And it is.  I would like you to put yourself in my shoes for a moment. How would you feel if someone approached you and offered to have God help you? The problem is that it doesn’t have the same effect as helping a person who is actually in trouble. I have had many people offer to take my arm when going down the stairs. Many times I accept, sometimes I don’t, but this has a different feeling.

The feeling I got was one of worthlessness. I felt like this person (abled) thought he had a power over me (disabled). I felt deeply unseen. Would this person understand that I was a mother? A teacher? That I owned a condo? Would he understand that I have a lot of agency and part of the agency is to shake off this exchange and go on with my day? Does he care?

I am the 99%

Hi All,

I support your efforts, and have been on several marches. As a professor and poet with cerebral palsy, though, I have noticed a lack of attention to how people with disabilities have been excluded, particularly from the discussion of civil rights.  I cannot stress enough that many people with disabilities regard themselves as a minority and want to be included in the civil rights conversation.

 As a minority, people with disabilities suffer the most from the global economy. The unemployment rate is 70%. This is not because people don't want to or can't work, but because the 'normative' body is heavily privileged in the workplace. Further, due to architectural issues, PWD don't have simple 'rights' such as accessibility to buildings. The government has two financial programs for people with disabilities - SSI and SSDI. In both these programs, although the recipient stays well below the poverty line, the money is taken away should the recipient do any form of work (this includes royalties and artist grants) and due to unlawful paperwork it is in not uncommon for people to end up 'owing' SSDI back payments. The ADA court cases have historically been won nearly exclusively by the defendant, not the person with the disability.

A very solvable step would be refrain from using the word retarded and lame. I'm far from the language police! But these words, which I have heard used numerous times, even on marches, are lazy and offensive.

Best, Professor Bartlett

Suffering from Several Policies

This recent article from India signifies everything I hate about the world: I guess I should look on the bright side - at least they are not throwing them in the river! India Infoline News Service / 19:19 , Sep 02, 2011 Children afflicted with cerebral palsy depict symptoms of late motor development skills and may also be hearing, speech and visually impaired accompanied by other associated diseases. In an yet inimitable medical miracle, older children suffering from the stinging, distressing disease of cerebral palsy have been blessed with a ray of new hope of being alleviated from the agony of having to depend on others for life. The path to this overwhelming discovery was initiated and practiced by Dr J K Jain, Consultant Pediatric Orthopedic Surgeon at Trishla Orthopedics Clinic and Rehab Center & Secretary Samvedna Trust, Allahabad. Cerebral Palsy is a condition of "Damaged Brain" that inhibits the normal functioning of the motor skills and leads to disablement in maintaining body posture. Children afflicted with cerebral palsy depict symptoms of late motor development skills and may also be hearing, speech and visually impaired accompanied by other associated diseases. The very utterance of the two words "Cerebral Palsy" conjures up images of these poor little souls striving to get the fundamental things of life straight. Cannot we do anything to assuage the excruciating mental pain to some extent?

Interview with Sunny Taylor

I interviewed the artist Sunny Taylor on disability at http://www.feministing.com/archives/020166.html This is the feministing website. Here, Sunny touches on how she views disability as a social construct.

Illness

It seems not kosher to write about this on a poetics/disability blog, but I am a writer. I write.

I have had a friend in the hospital for two weeks. He is seriously ill, although improving slightly. This friend has been in and out of my life for twenty years. Someone who I consider in my inner-most circle, almost family. This event has left me guilty, distraught, obsessed, angry. 

In my short life, I have lost four people intensely close to me -- a sister (her age 17), a boyfriend (his age 21), a stepmother (her age 35), and my dear grandfather (age 80). My corresponding ages were 18, 22, 30, and 35. Way too much grief for a young person. I am practiced at grieving.

I am convinced that I never grieved my sister fully, despite writing numerous poems based on her and getting a tattoo with her name. Despite the fact that there are at least four children floating throughout the world named after her. My sister's death was the worse case senerio; she was happy and loved by everyone. Her death, although by illness, was sudden. She changed many, many lives and I am just now, 15 years later, beginning to process the change her death caused in so many; not only profound changes in her parents and siblings, but her grandmother, her own friends, my friends, even the entire generation of children who never met Aunt Emma. 

My anger with my friend now comes from the amount of isolation I feel. I feel like, where are the people who I thought loved me? At the moment, I feel so uncared about. This is because when I mention what I'm going through to person after person; collegues, even relatives and close friends, they quickly change the subject. So, I am in a bind. I want to be quiet, I want to draw into myself, take to my bed, but I know this is not healthy. Yet, when I 'reach out' I don't get a great response either. 

I know how hard it is for people. I know when illness is brought up that people don't know what to say. They feel uncomfortable. Getting sick is something people don't want to think about. But, I wish people would. I wish people could deal and it makes me angry that they don't. This is the fundamental reason that society cannot deal with people with disabilities, of course. 

I wish schools would teach this stuff. Perhaps Kubler-Ross's 'Of Death and Dying' should be required reading. How can we live, if we don't know how to deal with illness? 

Brian Lehrer

Today ended up being a huge day. Through a course of events, I ended up getting in touch with a producer of my favorite radio show, Brian Lehrer on WNYC. I pointed out that, while the show is excellent about diversity, they rarely, if ever, included shows on people with disabilities. I sent them a list possible topics. Today, the show took one of my ideas and did a program on Obama's promise to people with disabilities. You can listen as a pod-cast here.  

If you are crippled, don't plan on getting milk

There are so many 'wrong' things happening in our world. Yet, for me, the primary issue is how grossly unaware people are on the plight of people with disabilities. Not only do PWD suffer from sigma, prejudice, unemployment, and general mistreatment, in New York, at least they deal with the issue other minorities take for granted -- movement.

Yesterday, at United Cerebral Palsy, one of my students simply wanted to go across the street to buy her favorite coffee. Yet, mobility issues and a lack of help prevented her. Since when should going to the grocery store be a privilege? Later, some friends and I had a discussion about New York's accessibility for people who use wheelchairs. I argued that the system is disrespectful and impossible to navigate. So, I called New York's access-a-ride to find out for myself. (Note: it is virtually impossible to use the subway in NY with a disability. There are very few elevators and these rarely work).

I got the reservation number for access-a-ride off the net. When you call, you have to push through two buttons to get to a person. Not bad. But, the first time, my call was disconnected. The second time I got someone right away. Here's the lowdown. You have to reserve 1-2 days in advance. There are no 'same day calls.' So, evidently PWD have to plan ahead. Say, if they are going nuts and need to get to a movie -- they are out of luck. Next, you can request a time, but there are no guarantees that the van will arrive on time. Also, this is a 'shared' ride, so when you are dropped off is up in the air. Evidently, PWD don't need to be on time. Finally, I asked if I could use the service daily to go to work. I was told I needed to call another department. The BEST thing was that the operator was nice.

Here is the message: People with disabilities are unlikely to need to be on time. They live in a timeless universe and yet, they should plan ahead, and they aren't expected to have jobs. 

I really would like people to see these problems. Why do we go on about so many problems and yet people right in our neighborhood are denied basic rights? 

Note: the bar that we were at is not accessible.

Haiku

Today, I taught my United Cerebral Palsy students the Haiku. I wrote a few myself on the way to work. (Note: Ours do not follow the 5-7-5 pattern).

These crippled bones

on the subway

won't someone give me a seat?

Give me candy 

to sweeten 

my bitter son.

Birds drift in light

outside

cathedral windows.

Dear Library,

I lost the books.

Go ahead, charge me.

Anxiety, Disability and Paul Auster

I'm obsessed with Paul Auster's books. This is part of a longer story. However, last night I was at a local new bar in the greater GNPT/WBG area with a friend. I left my Auster book...well...somewhere. So, I called the bar and said 'Hey, it's Jennifer. Did you find my book?' The person on the phone was not the owner {who knows me} but some girl who said, "Hey, you know that girl, like with MS, did she leave her book her." O.k. Miss brilliant. I don't have MS -- I have cP -- and I not a 'girl' I'm nearly forty and have a kid. I don't like being described as 'the handicapped girl' anymore than you like like being described as the brainless hipster.

Where is my book!?

The Working Disabled

However, what we see in the poetry movement -- and in the university -- is still only partially happening the what we like to call the 'real world.'

I was looking at job listings for my husband -- largely in private NY high schools. I noted something very interesting. Even schools -and certainly everyone else -- are still putting notes at the end of their hiring listings that they WANT minorities, that they don;'t exclude minorities. Ah, except for one! People with disabilities. Surely more women, African-Americans, and Asians have more jobs than PWD, so, in all fairness, shouldn't companies be hiring the least represented minority?

Read carefully. I'm going to tell you why it doesn't work that way.

Awhile ago smart people decided that there was no real reason to exclude women and race groups from the work force. They decided that this prejudice was unfounded and based on stupidity. Black people are not dumb. Women are not helpless. PLEASE do not think I am saying the system is perfect and all groups don't have trouble -- I'm not.

However, people believe that they can rationalize not including/hiring people with disabilities. These people are disabled, after all! Doesn't that mean they can't work? So, isn't the prejudice logical. Guess what, no! Now think of a list of jobs -- which of these jobs include a. walking b. walking straight c. hearing (remember one can use a computer) d. heavy lifting e. running track f. giving a speech to 1000 people g. seeing. If anything else, all disabled people could be movie ticket sellers. Those guys don't do shit! Seriously, 75% of jobs today involve some form of thought (usually VERY low-level thought) and a computer. So, why can't we hire PWD?

I hate to blame the victim, but PWD have to stand up too. The reason the other 'groups' have gotten so far is because they marched, died, and voted for their rights. I can tell you from experience, though, its hard to be rejected again and again. It's hard to be sitting across the desk from a person (say, Vicki Bernstein of the NYC teaching fellows or the lovely folks at Bronx Letters) and know that you are way smarter than this person and you know what they are thinking and there ain't nothing you can do 'bout it.

But, if my story isn't enough to convince you of the world's/NYC DOE's evils read this from today's New York Times: NOTE: Mr. W is a Hasidic Jewish man:

"Mr. Waronker, 39, a former public school teacher, was in the first graduating class of the New York City Leadership Academy, which Mayor Michael R. Bloomberg created in 2003 to groom promising principal candidates. Considered one of the stars, he was among the last to get a job, as school officials deemed him “not a fit” in a city where the tensions between blacks and Hasidic Jews that erupted in Crown Heights, Brooklyn, in 1991 are not forgotten.

“They just said he may be terrific, but not the right person for that school,” Chancellor Klein said.

Some parents at J.H.S. 22, also called Jordan L. Mott, were suspicious, viewing Mr. Waronker as too much an outsider. In fact, one parent, Angie Vazquez, 37, acknowledged that her upbringing had led her to wonder: “Wow, we’re going to have a Jewish person, what’s going to happen? Are the kids going to have to pay for lunch?”

WHOA NELLY! DID THE CHANCELLOR OF NY PUBLIC SCHOOLS JUST SAY IN THE BIGGER NEWSPAPER IN THE COUNTRY THAT SCHOOLS DIDN'T HIRE A PERSON BASED ON THEIR RELIGION? WHA? ISN'T THAT LIKE, ILLEGAL?

Color Vs. Gender, The Great Debate

In her editorial in the New York Times, Gloria Steinem makes some interesting observations about race, gender, and the democratic race.

Steinem writies, "What worries me is that some women, perhaps especially younger ones, hope to deny or escape the sexual caste system; thus Iowa women over 50 and 60who disproportionately supported Senator Clinton, proved once again that women are the one group that grows more radical with age."

And

"Why is the sex barrier not taken as seriously as the racial one? The reasons are as pervasive as the air we breathe: because sexism is still confused with nature as racism once was; because anything that affects males is seen as more serious than anything that affects “only” the female half of the human race."

But, if one was listening to All Things Considered last night, they may have gotten a different perspective. ATC had a piece with South Caroline female, African-American activists in light of Clinton's stupid MLK comment.

The Marvelettes, three powerful political insiders in Orangeburg, S.C. — Labrena Aiken-Furtick, Gilda Cobb-Hunter and Baraka Cheeseboro — spoke with Michele Norris about negative reaction to the injection of race into Democratic primary politics.

The Marvelettes say that most of their difficulties come, not from being a woman, but for being black. Baraka says, "they speak of the question, am I black or female? Black women are being forced to chose. Most of the problems that I have had come from being black, not a woman. They also speak about what legacy they want to leave their children and the question of whether they are willing to vote against someone who will advance the lives of people of color."

This is why I have had an easier time relating to the civil rights and gay movements than the feminism movement. I will not be disrespectful of the feminist movement, but, like these African-American activists, what has happened to me a disabled person has been so profoundly worse than what has happened to me as a woman. I can't even see any gender prejudice, because I'm so busy dealing with the other. If I had the choice between a able-bodied woman and a crippled man, I'd probably vote for the guy too.

Our country is in a strange time. While it is exciting to see two 'minorities' running for president, we cannot lose sight of the bigger picture. Who will stop the war -- not matter if their skin is black or they wear skirts.