This past weekend I went with some friends of mine to the Disability Pride Parade in Chicago. There were about 2,000 disabled and allies there to celebrate pride in our disability. My friends and I were late for the parade, we defiantly run on crip time. We jumped in the middle of the parade with our signs and our flags. It was awesome! It appeared that were more spectators out watching the parade than in the past. We got to the end of the parade and watched the belly dancers, the gay and lesbian marching band, and all these other different grass roots organizations were present. We watched the performers on the stage after the parade. One of them was a disabled artist who sang about his life and experiences. But the best part was watching the Integrated Dance Company from Chicago. It was very beautiful. For people that don’t know what that is, it is people who dance in wheelchairs and assistive devices with able bodied partners. I hope I get to go back next year with my queer, disabled posse. 
The Disability Pride Parade
Where Does My Body Go?
I was talking to my friend the other day about the struggle of finding your own body. She experiences disability like I do. Everyday our brains and our bodies misinterpret messages to each other. The brain is part of the body, they can’t function without each other. Therefore, the struggle is to find the beauty in it all. The only time where I don’t have struggles with this is when I dream. I don’t always remember my dreams but when I do I am always a spirit. I am never in my own body. In realizing this, it makes me question the whole concept of the body and gender. I can get around in my dreams, I don’t know if it is me walking or what. I don’t think it is. I feel like when I am in my dreams it is how I see myself in the real world. When I walk around in the real world I use my power chair but I don’t look down at my legs very often and my joystick is not in my line of vision so sometimes I forget about my wheelchair until I run into something. Similarly I experience that in my dreams. If I look for my body in my dreams and I look down, I fall and I wake up. That is always the sad part. My body is what connects me to other human beings. So finding this balance between your body and your consciousness is a struggle for me and I imagine everyone else.
My visit to the Perlman Center
Yesterday i went to talk to a group of young people and their parents about their disability. It was very enjoyable and interesting for me. I loved talking to the parents and the teens. I hope they realize I am here for a resource if they need me. There was one question that parents asked me that I thought more people would want the answer to as well. What makes people good advocates? I decided to write a list:
-Don’t reinvent the wheel (learn from the past)
-Introduce yourself to other disability activist and know their story because they will inspire you when people tell you no.
-Find older mentors.
-Talk to a counselor when needed.
-Be your own lawyer, know the legislation that affects you and your cause.
-Find friends just to be friends with.
-Find allies and other social movements.
-Keep all documentation from medical professionals about your diagnosis because you will need them if you want to take any sort of test if you have a disability.
-Use your assisted devices if it’s the way you communicate the best.
-Know that you are not alone.
-If you are a parent, let your child see your frustration if you are advocating for them.
-If you are a professional and the client refuses to take your advice, it may be the wrong time to introduce the tool.
-Have fun and love yourself!!
Looking Foward to Tomorrow
Hi all! I’m very excited, because I’m going to talk to a group of teens about their disability experiences tomorrow. I am suppose to be motivating them but I have a feeling they will be motivating me instead. I’m going back to Cincinnati to the Perlman Center. I was a student at the Perlman Center when I was in pre-school. I hope it goes well, I hope to give them some concrete advice.
A Heart-Wrenching Story
I recieved an article of the New York Times from my friend Anna this morning, “Boys Death Highlights Crisis in Homes for Disabled.” I was Shocked when I read this article, shocked and outraged. How could the state get away with treating people with disabilities like their worth nothing. I went back and looked over the article again and realized that this calls for activists like myself and parents of children with disabilities to understand what can truley go worng in a system with no checks and balances. In the article youll find that the disabled victims being served by the New York council on Developmental Disabilities, were recieving plenty of funding, each resident of the facility had a budget of $1.8 million per year. I think money is not the answer to this problem. Its a matter of proper thorough screening finding well-rounded cared givers. I know this is not only a struggle in new york but a struggles for every person I know with a disability, finding good people to take care of them. In my own life its been very difficult to find good care givers, who are doing the job for not only the money but for the well-being of the client. There needs to be a balance between state funded caregiving and community and family care giving. I say that because every states funding is so different for the developmentally disabled, and how its allocated out to people.
As I was reading the article, all I could think about is what would my life had been if I lived in New York State. I thought about all those adults and children like this boy who died and was profiled in the article. I hope that things do change and that Johnathan didn’t die in vain.
What is Disability Justice?
When I was in college, I studied social work. When I went into my classes I learned about all sorts of social problems: poverty, domestic violence, racial tensions, women studies, however, I never learned about disability. I learned about myself, as someone who lives with a disabilty, through learning about these other social problems. When I graduated I moved to Detroit and when I was there I met a variety of diability activist. The focus of activism was not only on access but exploring what is justice and what is disability justice. I am still trying to figure out this definition for myself. But this is my defintion:
Disability Justice- is a multi-mission driven movement. Disability Justice movement is a movement led by women and and other minorities, who also identify as disabled. This political movement explores the ideas of ablism. This movement strives to go beyond asking for access and challenges people to look at the whole person instead of just one part of their identity. Disability Justice is at its roots growing and redefining what it means to be disabled and what it means to be human. It challenges everyone to reexamine how disability and other minority groups identities reflect off of each other. -”Amanda Stahl”
So what would your defintion be of disability justice?
My trip to Rhode Island
Hi all! I just got back from Rhode Island where I saw swans on the beach and I realized that sometimes it is cold enough for it to snow on the beach. I also experienced my first lobster roll. Surprisingly it was very good. The plane rides there and back were interesting. When I travel I always realize how important these talks are. The airports should have more training on how to deal with assistive devices that disabled use because we rely on these devices to use in our everyday lives. If one of these devices break, we are out of luck. My wheelchair was abused by the people in charge of the luggage. They tore off the back of my chair and then they tried to fix it and it made it worse. My chair is worth over $18,000. Therefore, I think that it is important that the airports take these kinds of objects seriously. But the main reason I was in Rhode Island was to be the keynote speaker at the RIOTA conference. I believe it went very well. I was excited to be there and I wanted to thank everyone who worked at the conference. Giving me a chance to speak and tell a very important story. I hope I get another chance to speak like this again. I feel like I can improve but my overall message was heard and received very well. I hope I helped the occupational therapist see how they can improve their practices. I am attaching to my website the outline and resources that I used during the speech. I am also attaching my research about the effectivness of the combinations for students with disabilities in higher education. I hope these two resources can help people understand the disability experience.
Where do I fit?
I was going through the mail yesterday and my good friend Sara sent me an article from Bitch magazine called “Willing and Able” . It profiled an adult film star Loree Erickson. As I was reading the article I recognized myself in almost everything she was saying. Disablity and sexuality are very taboo subjects. People without disabilties are afraid of disabled sexuality. It is misunderstood. I could relate to what she was saying in the article about being desired. There has only been twice in my life when I felt that I loved someone. I remember the night that they looked at me as me and not as a disabled me. And this person stood there with me and held me. A second later you could see the pain come back to them and realize that I am disabled and that is a part of me. This person didnt choose me. It was painful but for that one moment they saw all of me. Three years later I opened my heart and myself again. I felt this time that this person loved me. It wasn’t hard to be around them and I didnt have to explain things to them. I told them that I fell in love with them right before I left to go home. I dont know what would’ve happened if I wouldve stayed but she was not afraid to treat me as a human and thats what I desire the most. It also made me think about a class in college I took about queer studies. The question is what is desire? I believe my number one desire is to be considered human, therefore, part of being human is being sexual. The idea that people with disabilities are asexual and dont have desire like anyone else is a false one. In the last point of the article it talked about community and building community and I felt that this point was the one I could relate to the most. I need help in day to day tasks so my relationships are very inportant to me friendships, family, and loving relationships I need to survive and live my life. Being disabled and being queer is very hard to understand and to explain to people. I dont feel like I fit into the disabilty community or the lesbian community. I feel like there is a whole community of queer disabled people who are just now getting a voice.
Going Beyond Access?
The other day I was working on my talk for the Rhode Island Occupational Therapy Association, a friend and a colleague of mine said that if we don’t achieve adequate accomidations and access at the University level how do we expect to get adequate access to jobs. One of the things that she said to me was that the queer community has done a great job connecting people that wouldnt consider themselves directly involved with LGBT issues, into the movement. And this is what needs to happen if the disability movement is going to be successful. The disability movement is different than any other social movement since disabled people recieved their rights and protections under the law. Before people without disabilities understood why they needed the protections in the first place. For example with race, peoples conscoiusness level to say this is wrong because raceism is constructed by society, helped bring on rights. However with the disability movement it has been the opposite. But to fully realized what it menas to get access in the world not only physical access one must fully explore what it means to experience ableism.
Being A Part Of The World
Hi World! I have been working hard this last month and half on a keynote speaking address Im going to be saying in RI in about two months. The last part of the talk is on the work force. As a very proud disabled woman, working has been a challenge. According to the US labor of statistics 33.4% of disabled men and 26% of disabled women are working. Compaired to 74% of ablebodied people that work. Being a part of the ADA generation, as my friend Tim likes to say, we deserve to be part of this world! And we demand it! As a part of this generation we have been included all our lives and we wont go back into the closet now. So, we are out and we are proud! We write the rules! We are not sure how they go or what they will look like. This is why we need help from everyones perspective to imagine the world 20 years from now and how disabled people will play a role in the work force. Thanks for listening.
