The Book Jacket to my Memoir (written in 2003)

For some odd reason I felt compelled to visit my geocities site that I started in the 7th grade and hasn't been touched in years. Good thing I did because it turns out that Yahoo is shutting geocities down in Oct and deleating everybody's stuff. There's stuff on there that I want (like below) and will have to put on my laptop.

I signed into my account to look at my extensive clipart collection and saw a file essay.html What's that??? Something I don't ever remember writing, but I apparently posted the admissions essay I wrote to get into the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. On my website I wrote "this is the fakest thing that I have ever written in my life. Wouldn't it be great if this happened in the real world?"

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

This is so bizzare. Bizzare in the fact that I found this during the time I am taking memoir writing class, and bizzare in the fact that I must have always known myself so well. It turns out this was not as far fetched as it seemed to me when I posted it on my site 6+ years ago. My goal still is to write "an ordinary book about an ordinary person who [struggles with] ordinary things." That's what I'm trying to do right now in fact.

It turns out that I went to Hofstra 1st, flunked out, and then went to MC 2nd. Going to social work school is still in the master plan, although not all the way in Berkley (I picked that b/c I was under the misguided assumption that Berkley was the mecca of disability rights, turns out Chicago is). I'd be more then exstatic if I got a job at Gillette some day. I'm never going to be a paralympic athlete, but it's interesting to note how prominate a role pets play in this essay. I guess I've always known how integral pets are to my mental health (what other term can I use? I hate that one). And running. Somebody at OOO mentioned Friday about getting a group together to start walking and signing up for a 5K. So I may do one. Dunno if I'm up for it or not. I don't know why I put down 8 surgeries, the count is 7, it was 6 then, still haven't done the last 2...

The part I thought was most unfathomable when I wrote it is "Cheryl started lobbying local disabled rights organizations in college." Me get involved in politics? Yeah right... Turns out that I did get involved in politics in college (see the CCA tracker to the right). Within the last year I've lobbied on both the state and national level. Who woulda thunk it? Get involved with ADAPT? Not me. They're too weird :D No one's ever going to attach my name to a bill, but I am going to work to finally get the Disability History and Awareness Month bill passed which will change the way all children, teens, & young adults are educated, both disabled and not. I am going to have an impact like I never thought I would. How cool.

HB281 is no longer

Today, as I already said in my last post, I went to Annapolis to testify at a bill hearing for a bill about including disability rights/awareness education in schools for K-post secondary students. A parent of a child with Danny Walker syndrome who works for the Danny Walker syndrome association, someone who works for the Maryland Developmental Disabilities Council, and another friend from CDRC, as well as the Secretary of the MD Department of Disabilities testified. The two other people who testified told me they went to check and the bill did not pass the house. WTF??? Apparently they grouped it with a bunch of other "days" and people don't like days. But, they said African American Baseball day got voted on seperately and that passed. WTF???

If the bill is voted on on its own in the senate and is seen for its own merit it should pass. It's not a "day" or even a month. It's an educational initative. When it passes it goes back to the house. So if you are a Maryland resident, please find out who you're state senator is and urge them to support the bill. If you're reading this post I don't think I have to tell you how important it is.

HB281 is now SB907

The bill I submitted written testimony for has passed the house and is now being heard in the senate tomorrow afternoon. I will be schlepping to Annapolis to testify in person this time because it is on a better day of the week. This will be my first time taking paratransit somewhere that far. It could be interesting... If you care at all, my revamped testimony is below, and if you live in Maryland, find your state senator, contact them and tell them to pass it.

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My name is Cheryl *censored*. I am a senior Family Studies and Community Development Major at Towson University and am looking forward to spending my life mentoring children with disabilities after graduation. I am here today in strong support of SB907.

I have been involved in disability rights/awareness for the past 9 years. I started speaking to groups when I was just 15 years old, through a program run out of Montgomery County Public Schools, Montgomery Exceptional Leaders. After high school I continued seeking out speaking opportunities on my own. I have spoken to children as young as 9, and have done several professional training workshops.

I have chosen to work with children with disabilities because I've witnessed first hand the high comorbidity rate between having a visible disability and depression. It breaks my heart to hear teens and peers talk about feeling worthless just because they can't drive or have some scars from surgery. It doesn't have to be this way, people don't have to focus just on what they consider to be their negative aspects, although isn't that human nature? Doesn't EVERYONE?

SB907's emphasis on educating K-12 students will help ALL students, not just students with disabilities, because the curriculum will help students to learn that there are many factors that make people who they are. It will also help to foster a sense of pride in students with disabilities by introducing them to famous people who are just like them—something I wish someone had done for me when I was a kid.

I was also pleasantly surprised to learn that SB907 places a significant emphasis on post-secondary education, something I have focused on in recent years. Family studies majors graduate prepared to work in a variety of human services jobs. Many of my fellow graduates will end up working front lines with children and/or families touched by disabilities, and after interacting with them and hearing a free association with the word disability, I was more then frightened by my vision of them interacting with disabled clients in the field. I knew my department wasn’t doing a good job preparing graduates to work with this population so I took it upon myself to undertake a very long and overwhelming independent study. For about a year, I poured my heart and soul into creating a three hour disability awareness workshop for 120 Towson University students enrolled in various Family Studies classes.

Preliminary data from that initial workshop shows overwhelmingly how well it worked. Students responded that they learned things such as disability etiquette, the impact of disability on the individual and family, and the need to view each person as an individual, among other things. The workshop was viewed by the Family Studies Department and other associated Towson University departments (Disability Support and Towson University Outreach) as such a success that it is offered as an independent study to a senior Family Studies student annually. The Oct 2010 workshop will be the 3rd annual. It is my greatest wish that disability will start to become included within lectures covering cultural competency and that something along the lines of my workshop can be replicated on all of the campuses across the state and attended by every student in a human services major.

Please support SB907. Your support means a lot to everyone that is, has been, or will be touched by disability in their lifetime.

My Testimony in Favor of HB281

[image description: the disabled & proud logo--black rectangle, purple boarder, white writing]

I mentioned in a previous post that I found out that a bill was being introduced into the Maryland Legislature in favor of Disability Rights/History education in schools. I wish I could have done a bit more for this, and I wish I could have skipped class and gone to testify in person, but I did the best I could, and in fact, I think I went overboard... Can someone tell me how to rein in the passion?

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Testimony in SUPPORT HB 281

Health and Governmental Operations

And

Ways and Means Committees

February 25, 2009

By Cheryl *censored*

My name is Cheryl *censored*. I am a senior Family Studies Major at Towson University. I am writing this in strong support of HB281 and am saddened that my class schedule does not permit me to testify in person.

I support HB281 for 2 reasons. The first and most important reason is the bill’s emphasis on educating K-12 students and the pride and understanding that will instill in our youth. The second reason is because I was very excited to read that the state’s public colleges and universities were included in the bill as well.

For about a year, I poured my heart and soul into creating a three hour disability awareness workshop for 120 Towson University students enrolled in various Family Studies classes. This was preceded by a discussion wherein my “peers” without disabilities were asked what first came into their mind when they heard the word disability. Their answers were some of the most ableist—prejudice in favor of able-bodied—remarks I have ever heard. They were “the elderly, people who cannot work, people in wheelchairs, and young children.” I only fit into one of those categories and that’s only sometimes. I don’t always use my wheelchair. Sometimes I walk, or waddle as I prefer to describe the way I walk.

Family studies majors graduate prepared to work in a variety of human services jobs. Many of my fellow graduates will end up working front lines with children and/or families touched by disabilities, and to say I was frightened by my vision of that would be an understatement. I knew my department wasn’t doing a good job preparing graduates to work with this population so I took it upon myself to undertake a very long and overwhelming independent study.

Preliminary data from that initial workshop shows overwhelmingly how well it worked. Students responded that they learned things such as disability etiquette, the impact of disability on the individual and family, and the need to view each person as an individual, among other things. The workshop was viewed by the Family Studies Department and other associated Towson University departments (Disability Support and Towson University Outreach) as such a success that it is offered as an independent study to a senior Family Studies student annually. The Oct 2010 workshop will be the 3^rd annual. It is my greatest wish that something such as this can be replicated on all of the campuses across the state and attended by every student in a human services major.

My Evolving Disability Pride and Empowerment

As you see below, I have wondered who my peers are since I was a child. All people identify with people who are most like them. Now that I’m an adult, am about to graduate from college, and am involved in the disability rights movement I am finally able to dual identify. I tell people I am bi-cultural. I have friends and peers who are struggling through my Senior Seminar class with me, as well as other academic experiences, but who may or may not have a disability. I also have friends and peers who have spent time in Rosewood or various nursing facilities, who are activists here today for Developmental Disabilities Day, and whom you may think are nothing like me but are often more like me than anyone else. I am comfortable being me and I ache for others who are not yet that comfortable being different.

What Disability Awareness Month Means to Children

I was born premature which resulted in a diagnosis of spastic triplegia cerebral palsy (CP) and in 2007 I was diagnosed with bipolar II disorder. When I was growing up I went to hours and hours of physical, occupational, and speech therapy, as well as therapeutic horseback riding, and at times swim therapy and massage therapy. I couldn’t walk independently until I was 4 and then I had 7 surgeries between ages 5 and 19 which required more hours of therapy and adaptive equipment such as orthotics, wheelchairs, crutches, and walkers, and time away from school and peers.

PEERS Who are my peers? Who were my peers? I wish I knew…

Although my CP related motor skills issues and my later psychological issues impacted my school performance greatly, my disabilities have not impacted my intellectual capabilities at all. I was mainstreamed starting in kindergarten and enrolled in Advanced Placement classes in high school. I’m planning on pursuing multiple masters degrees, and maybe a PhD. I was never in school with other kids with significant disabilities. I was the only kid with a physical disability in my elementary school and later was the most disabled person to ever be in honors/AP classes in my high school. Everyone else in my high school with a physical disability was in special ed.

While this was academically appropriate, it turned out to be far from ideal. It fed me a very detrimental message. My “peers” were all non-disabled kids. As young as 7 I began to become ashamed of my disability and wanted to hide it from them. I didn’t want to be seen in public in my wheelchair, or worse, near anyone else I knew who used one. To me, having a disability automatically meant that you’re intellectually disabled. I knew I wasn’t like my “peers” because they didn’t go to therapy 3 days a week after school and I didn’t go to ballet or swim team like my best friends. I also knew I wasn’t like the kids I knew in special ed. So I was peer-less and in limbo most of my life, not wanting to identify as a person with a disability, but not able to fake my way into passing as a person without a disability.

My understanding of Black History and Hispanic History months (I am neither African American nor Hispanic) and the emphasis on teaching about great African American and Hispanic leaders is to instill a sense of pride in young African American and Hispanic students and to give them role models to aspire to. For other students, teaching about famous minority leaders helps present a more well-rounded picture of history. For both groups of students, teaching about minority leaders helps to dispel racist beliefs that we all hold.

Well what about famous disabled leaders? People with disabilities identify as a distinct minority culture as well. We have our own literature, idioms, and customs. We also have our own prejudice, ableism. With 18% of the country being classified as having a disability we represent a larger segment of the population than African American or Hispanics. Our culture encompasses these groups as well. Disability knows no ethnic, racial, or economic boundary.

So why don’t we teach disability rights history in schools? It seems more then obvious to me. I know who Martin Luther King Jr, Rosa Parks, and Frieda Kalo are. I’m sure you do too. I also know who Ed Roberts and Diane Coleman are. Do you? Ed Roberts was one of the founders of the disability rights movement. He obtained a degree from UC Berkley, started the independent living movement, and in the 1970s led a month long protest to get the terms of the rehabilitation act instated. He was on an iron lung. Diane Coleman works for a large independent living center and founded a very large, very well known, and very successful national disability rights organization. She’s a lawyer and she’s also in a wheelchair. What about Michael Phelps even? Everyone knows who he is, but do you also know he has ADHD? Here are 3 examples of successful people with significant disabilities. There are many more.

When I was 15 I was suicidal because I was despondent over being different. I know of other people as well. I didn’t have a MLK or Frieda Kalo to look up to. I didn’t hear about Ed Roberts or Diane Coleman until college. Recently I began to explain Ed Roberts and the independent living movement to my mom who was flabbergasted that she was an adult while all of this was going on and this was the first she had ever heard of him. MLK and Rosa Parks are household names. Maybe if Ed Roberts was a household name I wouldn’t have felt so marginalized from my “peers.”

I thank you from the bottom of my heart for your support of HB281 and the empowerment of the citizens of Maryland--the empowerment of youth with disabilities, the empowerment of families with disabilities, and the empowerment of students and professionals who work with people with disabilities.

I GIVE UP!!!!!

[image description: woman sitting in front of a computer about to tear her hair out]

I have to do this assignment for Senior Seminar in Family Studies based around one of the family life education content areas. I was assigned family life and public policy and am trying to design a research paper and 75 minute presentation around what I decided to term Nothing About Us Without Us: How to Empower Your Clientele. I am shaping the whole presentation around Bob Kafka's Pitchfork Approach to Social Change. [see picture left. It's a hand, but same deal]

It could turn out really cool. But could and trying are the words of the day. I could scream right now if I wasn't right in the middle of the library. There's just this one big hitch--this 8-10pg research paper that has to go with it. We have to have 4 articles from peer reviewed journal articles that support our topic of choice. Fine. Not a problem. What is a problem is that they have to be actual research studies done on our topic. Not literature reviews, not conference papers, and certainly not newspaper articles/ADAPT press releases. Well let me correct myself a bit. We can have those things included as long as they're secondary to the damn research articles that I can't find. I've sat here for 3hrs searching databases. I can find things that have been published in peer reviewed scholarly journals but not research studies.

My professor did find me an article that has to do with Olmstead. It was written by some very cool people. Carol Gill from University of Illinois at Chicago and Diane Coleman of Not Dead Yet, among others. Someone from Access Living is even listed as an author. Anyone from Chicago is A OK in my book. Chicago seems to be the Mecca of disability rights. The problem, I gave up with the community organizing thing and went to Olmstead instead and couldn't find anything else to use either. I can't go off of the reference list from the article I have because most of their articles are Chicago Tribune articles. Can't use those...

I could do a really cool awesome fantastical presentation if only I could FIND SOMETHING!!!!! So I give up. I surrender. I am officially done for the day.

On another note a bill addressing disability awareness in educational settings (all public elementary, secondary, and post-secondary institutions) has been introduced into the Maryland legislature. The Maryland Disability Law Center has decided to support it of course and I have personally been asked to be the lead point person on all efforts surrounding this bill, even though I don't work for them. Stressful, but AWESOME!