Access to Education Conference March 27, 2004

Today I have been asked to talk about being educated in an inclusive environment and how that experience was essential to whom I am today – a college student and an advocate for people with disabilities.

Although I spent my early years in special day classes, I always spent part of the day with non-disabled peers. After I was introduced to facilitated communication when I was in the eighth grade, my parents and I realized I should be fully included in high school so I could go to college. When bad behavior interfered with my education, I was removed from the class until I calmed down. Those people who believe really badly behaved non-verbal autistic people are retarded and wouldn’t benefit from regular education are wrong.

I know I was extraordinarily lucky to be going to school in Whittier where that myth was dismissed in 1991 when so many of us were validating our typing and proving we were intelligent. I am not only talking about people with autism. My class had students with Down’s Syndrome and other diagnoses that resulted in a label of retarded. My parents believed in my intelligence and were willing to spend massive amounts of time and effort typing with me. I very much needed that each day so my mind and body could get organized and less autistic. Autism never goes away, but now I spend a lot less time and energy fighting it.

Very early in my life, before I was aware of anything, my mother became involved in advocacy for children with disabilities, so advocacy was always a normal part of my life. My mother was an advocate for me before I could type, then I joined her when I learned how to express my needs. I attended my I.E.P. meetings and actively participated in all decisions. When problems arose I told my mother or Jackie Leigh, the psychologist. I continue to advocate for myself. At school the professors need to know what accommodations I need. They are always willing to do this because the quality of the work is never compromised. For example, professors often let me do tests in a separate place so I don’t disturb other students and they don’t distract me.

. When I began to type at thirteen and people around me began really to listen to me, I realized I had the power to influence all non-believers who still thought we should stay in segregated classes because we couldn’t learn. As early as 1992 I started speaking at conferences about inclusion. I realized it was important for people to see me so they could see how autistic I am. So, whenever I am asked to present at a conference or to a college class, I always say yes.

The articles I wrote for the Los Angeles Times in 1995 openly challenged preconceptions about retardation and autism. They were the reason I was approached by the Life and Times producer at KCET to do a program about my inclusive educational experience. I believe that exposure helped many parents realize what is possible for their disabled children. Being a national board member for TASH also is a type of advocacy. Whenever discussions occur, I am always able to give input from the point of view of a person with a severe disability. Right now I am being filmed for a CNN documentary about autism and how I live my life. This will be seen nationally and internationally. I hope it will enable people to recognize the value of inclusive education and inclusive communities.

The value of an academic program should not be underestimated. I believe my mind was able to rewire itself because of academics. I needed to be able to focus before learning could occur, but I positively didn’t need a repetitive program to achieve this. By being in regular classes and wanting to be successful, I was able to force autism to let me be. Once I began to learn academics, the non-autistic part of my brain got stronger and stronger, and sitting in class got easier and easier. When an administrator tells you your child is not ready to be included, let me know, and I will tell him/her that he/she is wrong.

Very often students are given a certificate of completion rather than a regular diploma and this places restrictions on where he/she can go to college. The community college will accept the student, but they may insist that the student take special education classes. I got a regular diploma and had the choice of going to any college I wanted to. Of course, I had to take the SAT just like every other student. Since we can be in high school until we are twenty-two years old, we can take regular education classes with a lighter load. It took me five years to complete high school but I could have taken longer if I needed to. As a regular high school graduate with a 3.98 GPA and an SAT score of 1370, I easily was accepted by the college of my choice –Whittier College. I am a successful. Student with an A- average and was inducted into Phi Alpha Theta, the history honor society, in 2002. I continue to take rigorous classes but now only one each semester because of the heavy reading and writing requirements.

To the very wonderful parents in the audience, I want you to know that you must become an advocate for your child. I don’t know if your child is like me, having untapped intelligence hidden beneath an exterior of disability, but I do know that stimulating someone’s mind through rigorous education doesn’t have dangerous side effects, so why don’t you take a chance and give your child an opportunity to really become a member of society.

Sue Rubin

Srubin693@earthlink.net