Cerebral Palsy Chat Girl
Tuesday, May 29, 2012
being 26 and single
so, I had lunch with my friend faith today. We both are 26 and single. We talked about there is not no guys out there who have a real potential. I am looking for a guy who can accept me who I am. I think real love doesn't exist anymore at least for mygeneration. but of course I dream about a guy who sweeps me off of my feet and live happily ever after. I even dream about my wedding day. But let face it I pprobably will not get married. I will work a lot and get black labs. I guess it will be a good life,. I don't know I am still looking for Mr. Right. LOL maybe he is reading this.
Sunday, May 27, 2012
reality sucks
I went to my mom's this weekend and I had a tote of stuff. It was all of my baby stuff. I realized I can't have children. I have known this long time now but I was hoping. When I saw my baby blanket it hit me. I don't have physical ability to raise a child. I am scared to hold a baby without hurting it. I know it is possible to adopt but I don't know the agency that would let me.I need to get a24 hour nanny. it would be expensive. I couldn't do it because my work I want to be in it doesn't pay well. that is okay. I decided to give my stuff to mybaby nephew . that way it can stays in my family. It makes me angry because I know I would be a great mom to a child. It sucks
Friday, May 18, 2012
I'm a Big Girl Now
Three days ago, I got my very first van. I have been using CHESCO's van for the past few years and I'm happy to see it go, although I am very greatful for getting to use it. Some of my staff and I lovingly referred to it as "Bessie". It looked liked a Bessie. It was huge. It looked a bit like Bella's truck from "Twilight". Getting in and out was a slow and often noisy process. I had to get in through the side, which made parking difficult because I always had to park where I wouldn't be blocked in, so there could be no cars on the right side of the van. Bessie was rusty and the electric lift would squeel and her doors sounded like shot guns firing when they were shut properly. I had been running around like a mad woman because I needed to get insurance and registration. Everything's finally in order and the van is here! i just need to put the permanent plates on. This new van is awesome. I can get in through the back door easily without any lifts and that means I can park wherever I want and don't have to drive around finding the perfect parking space. The doors are all electric. My staff can just touch the doors and they open. It's not huge like Bessie was and it's a pretty silver color. The best part is the sound system! I finally have bass and a CD player and MP3 port so I can listen to my music loud. :) Off topic...I went to an ABLE meeting. The school district was discussed, specifically the current treatment of children with autism. Some of these children are being locked in tiny rooms (like cages) for long periods of time. This happens when the school workers feel that the child is out of control. I think that these children are "out of control" because they are frustrated because they have communication barriers. Teachers and Aid's are not always properly educated/trained in working with children who have autism. One mother from the ABLE group spoke about her experience. She is moving her child to Crotched Mountain because the public school her child attended was failing to meets the childs needs. I think this is a good thing and a bad thing. His needs can be met at Crotched Mountain but he will not be able to intereact with so many of his peers. He will be more isolated. In my dream world Crotched Mountain could include children from public school's to be involved with plays and other fun activities. I wish they could start a Glee Club. Including children in these activities will take money though and that is sparse. If I ever win the lottery 1/2 of the money I win will go to Croched Mountain and leadership, as long as they work together.
Saturday, May 12, 2012
Thank You For Getting Arrested For Me
So it's almost Mother's Day! My mother, Jody drove all the way from Maine so that I could treat her to a mother's day lunch. I also got her another present, which she loved and thought was hilarious. When I was 17 I attended a public high school in Maine. Because I was a girl with disabilities the school had the choice to either find ways to include me in activities or alternatively they would have to pay funding for me to go to the Croched Mountain facility where I could be included in activities. At first they said they would pay for me to go to Croched Mountain but then they changed their minds because it was too much money. My high school did not want to pay funding for me, so they agreed to accomodate me. Apparently their idea of inclusion was to leave me alone with an aid in the Special Education department while the other students went on activities and participated in out-of-school events. I wanted to be in regular classes with an aid, because I am smart. My disabilities are only physical and I wanted to be a part of the classroom like everyone else. When my Mom found out that this was the schools way dealing with me she became very angry. She yelled at the school's official's for the horrible way they treated me. That didn't change things. She decided to take matters into her own hands and practice her right to peacefully protest. She came to get me from school early one day and we went to the front entrance of the school. She took out a pair of police issue handcuffs and chained herself to the doors. I was right beside her. We were hoping to get some attention. Well we did. When the police came they told us to leave and we both refused. She was arrested. For whatever reason, probably because of my disability, they chose not to arrest me. My mom called her partner Tess to come and be with me and mom was detained. Tess offered to take me home but I said "No". I wanted to stay and keep protesting. She left and I stayed awhile longer. I needed to make a point. I made my point and the public high school, pressured by the media coverage of our protest, decided to pay for me to go to Croched Mountain where I stayed for the next 7 years contently. If it hadn't been for the time I spent at Croched Mountain I may not be where I am today, living independently with a strong supportive network. So this Mother's Day instead of flowers or candy, I took my Mom out for lunch and have her a yellow T-shirt. The T-shirt reads, "Thank you for Getting Arrested for Me!". - Happy Mother's Day!
Saturday, May 5, 2012
Last night I wanted to celebrate. My staff called one bar and asked if it was accessible. She said well there are two stairs in the front and one in the back.We decided to go somewhere else, but it was an old person bar lol. Keene is a college town. It doesn't have a club, like in Buffy the Vampire Slayer. I know Buffy is old school, but I can relate to her because she was strong willed. She had a watcher and thought of him as a father figure. I have a watcher and I think of him as a father.
Friday, May 4, 2012
About Me
My name is Jennifer McIntosh. I am 26 years old and have attended Keene
State College since January 2010. Prior
to this, I attended Manchester Community College. I am a junior majoring in psychology. I have cerebral palsy but cerebral palsy does
not define me. There have been many challenges I have had to overcome
throughout my life. My family has been there since day one especially my Mom. Although
we fight sometimes I know she will be there for me no matter what. My uncle is
a buffer for us. He is like a big
brother to me. My family gave me confidence in myself and always encouraged me
to work thru my hard times and reach for my dreams. One of my challenges that I
face each day is verbal communication.
It has been very frustrating knowing what I wanted to say but not being
able to say it as quickly and efficiently as I want. I currently use an ecko
augmentative device which I affectionately refer to as “Pinky”. Even though I have cerebral palsy I am a
regular college student. I stay up late doing projects. I also go to my friends
dorms. I see myself as a young woman who just
happens to have a disability. I kind of feel like I don't have disability;
instead I view myself as a woman with issues. Hey everyone has issues.
Sometimes I
am in groups at school and I don't feel included because others students don't
know how to communicate with me. But by the end of semester they learn how to
communicate with me. They begin to talk about movies and other things to me.
Sometimes my friends talk about their boyfriends and I used to feel excluded
but I had a boyfriend (who I dumped). I have still never been kissed. I think
it is harder for girls who have disabilities to date but we still want to just
as much as any other girl. I can tell many stories of where I’ve been,
including my first drink! I was with my friends and it was the day before my 19th
birthday and I had a hurricane. It was delicious. I got drunk that night. In
the morning my mom called and my friend answered the phone, told her I got
drunk they didn’t tell me that I was going have a big party when mom came and visited that
day. She gave me the look. This past year I completed a dance class at my
college. It was so much fun and I made a few friends.
Let me tell you a little bit about
myself. When I was three, I began at a preschool that focused on special
education. In order to go to regular class I needed to take a test. I passed
this test, was mainstreamed, and was able to go to these classes. I started to
make friends, and have sleepovers. I remember I was nervous to start regular
classes because spelling was my challenge. To help me, my mom put close caption
on TV so I could learn to spell better.
Since my early childhood my family
helped me communicate by saying the alphabet while I indicated with a nod which
letter was needed to spell out what I was saying. I still communicate this way with different
people in my life who know that communication system. When I was ten, I began to use a computer
and switch to communicate. At twenty
one, I started using a communication device called Pinky. I used it with a head
switch, which was very time consuming. In April 2011 I get a new Pinky that
uses eye gaze instead of a head switch. This has helped me to communicate at a
faster pace.
My mom received assistance from Maine
for awhile, but when I turned twenty, Maine told me that I had to start looking
for a nursing home to live in. At the
time, I thought that I had to do what they told me, which made me feel
scared. I felt powerless about my own
future. I didn’t want to live in a nursing home because I was only twenty. I
have already lived in a group home and did not want to live there any longer. I
was worried because Maine only offers support to those who were mentally
challenged, not physically. The only options available to me were to move into
a nursing home or continue living with my mother as my only caretaker. We would
kill each other! I was trying to find help, but the Department of Health and
Human Services system is very complicated, and left me confused. When I was 21,
I formed a group to help me with my pursuit to fight for my rights as an
individual. We succeeded, and over the past four years I have worked to fulfill
the dream of living on my own. I am happy to say that I moved to Keene into my
own apartment May of 2010. I still there today.
In 2007 I was nominated for the
Institute on Disability’s Leadership Series.
I
really wanted to take this series and was excited to be accepted because I
wanted to learn how to be a better advocate for myself and others. At the
series, I learned to think outside the box. This was really important because
the work of advocacy needs to be creative.
I realized I truly can be independent.
Before the series, I was hoping to live in a group home, but since then
I’ve widened my choices. I currently
live in my own apartment with support staff.
I learned to talk to my representatives in the Legislature because they
have the power to make changes in favor of those with disabilities. Until the
series I never was interested in politics, but now I actively participate
because I realize their decisions affect me personally. The series also taught
me how much more effective it can be to work towards a goal with other people.
In the summer of 2010 I went to a
weeklong training in Virginia called Gamaliel. The Gamaliel group is a church
based organization. Although training
itself was difficult due to tough, heartbreaking questions, it was also very
liberating. It was difficult to be asked to face my own demons and oppressors
to see what was really standing in the way of my full potential. There were
funny moments in addition to the difficult moments. For me, it was funny to see
the fear in the eyes of some of the pastors when I asked them for a “one on
one” meeting. These were middle aged men
that looked like linebackers for the Patriots!
I’d get near them and they’d start to fidget in their seat. They started to feel more at ease when I
explained how I communicate using Pinky, and went through the alphabet with
Linda Q. People thought I was just a
pretty girl in a wheelchair but when I talked, their eyes started to see the
real me.
Considering New Hampshire’s history of
disregarding people with disabilities, I have a good life. I work hard, study
hard and enjoy friends and family. I
don’t live in a hospital or institution where I’d be left to rot. It wasn’t all that long ago that society did
that to people like me. Fortunately, with the help of technology like Pinky, I
can advocate for myself and the rights of others with disabilities. I will
continue to educate the public by using my voice so that they too, can dream
about things seemingly impossible.
If I didn’t know my rights, I probably
would have given up a long time ago and would be in a nursing home somewhere in
Maine. But I’m not! I’m loving my own apartment here in Keene. I’m making my
own decisions and I have rights.
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