Meet Harry C.  Harry is forty-four years old and has had Spina Bifida since birth.   Harry is independent, a fighter and disability advocate.  He has lived on his own with supports in the community for many years.  Harry came to Northeast Center for Special Care early in 2005 after a hospitalization for help with an infection. He has done very well and is being discharged back to his home in the community in May of 2005.

Here is his story in his own words:

I was born in New Jersey.  My family didn’t live there very long, we moved first to Rhode Island and then Massachusetts.  I went to the Children’s Hospital up in Boston for the first few years of my life.  They tried to do some work on my legs because I have Spina Bifida.  When I was six we moved to New York State and I lived in Rockland County. 

I became affiliated with Haverstraw Hospital through Camp Jawanio – I went to school at Camp Jawanio the first few years of my life because I wasn’t mainstreamed.  This was 1967 (back then students with disabilities were placed in either special schools or segregated into special education classes – Ed.) and I stayed there until 1972 when I was mainstreamed into one of the elementary schools in Rockland County.  I was one of the first kids that were mainstreamed.  That was very difficult.  I didn’t fit-in with the kids who had disabilities and I didn’t fit-in with the kids who didn’t have disabilities.  Back then I didn’t listen to rules and I didn’t want to be stereotyped or labeled.  I didn’t do what people told me to do because I was disabled and I tried to act “normal” and they didn’t like it. 

We got them to send tutors but they weren’t as regular as they should have been.  We also tried a system in our house where I could listen to what was going on in the classroom.  Sometime the teacher would forget to turn it on.  Because of that my mother did a lot of teaching with me.  My education was up and down.  I was thrown out of school three times because of my disabilities and problems with other kids.

I did learn a lot of things by TV.  I was one of those kids that liked to watch everything.  When I was small I watched Bozo the Clown, but I also watched the news.  I learned about the Viet Nam war at seven years old.  The TV was a window on the world for me.  It took me a while to really learn reading but when I did I had access to my parents books, they were avid readers and we always had books in the house.  I was also interested in science and art.

When I was twenty I started attending college in New Paltz.  It was the first time I was on my own and I went a little crazy.  I became the guy who did a perfect wheelie down Bacchus Restaurant staircase!  Some classes I did well in others I didn’t.  I did well in the classes I was interested in.  I live my life by what Samuel Clemons said: “I never let schooling get in the way of my education.”

“I haven’t been able to paint in such a long time that it’s refreshing to do it.”

I’ve had a number of jobs.  I did tutoring for a time and helped a number of kids who were having a hard time with their homework – they went from C’s and D’s to B’s and A’s.  In the eighties I worked at Rusk Institute in their recreation department.  I worked with spinal cord injured people to go to bowling alleys and the movies.  It was interesting, a lot of places weren’t accessible then and a lot were not happy to have people in wheelchairs come in.  I had a bar once not allow me to come in unless I had an aide with me. I had a number of movie theatres in New York City tell me I couldn’t come in because I was a fire hazard. I’ve also been involved with organizations that advocate for the disabled. 

A few months ago I had kidney stones and an abscess.  I was in a hospital and the Doctors there told me they couldn’t do anything about he kidney stones until the infection went away and that all I needed was nursing care so they gave me a list of nursing facilities.  They were just regular nursing homes.  I knew about Northeast Center because I had a friend who was here and I’m interested in art and knew this was a good facility.  It was a good choice.  I’ve met a number of people here who I needed to meet.  It was good Karma.

I was kind of in a funk before I came here.  I wasn’t sure what to do with my life – I’ve been there a number of times when I’ve found something I want to do and then just lost interest.  Coming here, meeting new people, meeting my roommate who is a quadriplegic – I’ve found people to help and people to be around.

The nursing staff has been very helpful; I’ve always looked at nurses as the greatest people.  With all due respect to Doctors I came up with the saying long ago: “Doctors with they could walk on water – nurses can and do!”  Maryann, Barbara and all the nurses on TBI-5 are very helpful and considerate.  When I first came here I talked with them and they listened to me and consulted with my specialist.  They are very good with wound care.

When I first came in I had previously lost a lot of muscle mass and I was weak.  I got Physical Therapy with thera-bands.  I worked with Arlene, a Physical therapist.  After about three weeks she graduated me because I started throwing her around the room along with the thera-bands.  The therapy department also got me a new wheelchair and a better cushion that is a gel cushion instead of a RoHo.  People have helped me out in other places I’ve been at, but they decide what I need which is not always what I really need.  The Therapists here listened to what I was saying; they discussed it with me and gave me exactly what I needed.  They didn’t know my situation as well as I did so they really helped me out with that.

I’ve been working with Susan Togut in the Fine Art Program and working with a couple of other Neighbors on a mural project.  I’m also working on a painting, which is taking me a long time but is really coming out well.  It’s an idea from Greek Mythology.  I haven’t been able to paint in such a long time that it’s refreshing to do it. 

I am going to go back to my apartment, where I was living before going into the hospital.  Cecilia, my Social Worker has been helping in setting up services with nursing and home health aides.  The staff here really do care.

Questions?  E-mail us:
ncsc@northeastcenter.com