Debra Burke: The importance of our community

[Editor’s Note: This is the third in an occasional series of profiles designed to share personal accounts of how other people with disabilities are doing in the community.  Last year, Nicole profiled Tina Schroeder  and Kathy Hagen of Minneapolis.]

Debra Burke works as a Client Services Manager for Care Planners, a PCA company in St. Paul, Minnesota.   She has Osteogenesis Imperfecta and uses a power wheelchair.  Both of Debra’s parents are disabled, which gives her an interesting perspective on disability culture and history.  Debra is 31 years old.  She has recently bought her first home in Crystal, where she lives with her 4 cats.

Access Press:  Can you describe a little about your disability?

Debra Burke:  Osteogenesis Imperfecta (OI) causes my bones to break easily and become deformed.  I also have problems with my teeth and hearing   it affects anything having to do with my bones.

AP:  How do you feel about your job?

DB:  I’m proud to work for a company that’s run by and for people with disabilities.  I think it’s time that disabled people start taking care of each other. I like being a part of a PCA company that is not just a service, but that provides an independent living model for people.  I also like having a disabled employer because she is very understanding when I have issues with my disability.

AP:  What were your early views of disabled life?

D.B.:  Disability has always been very prevalent in my life.  Except for my sister who is able-bodied, I grew up completely surrounded by people with disabilities.  I have the same disability my mother did (she passed away in 1992) and my father is a double amputee.  Disability wasn’t ever a separate part of my life, it just was life.

My early images of disabled life were very positive.  My parents and the majority of their disabled friends were married, had children,  jobs, cars and homes   they lived very normal lives at a time when a lot of people with disabilities didn’t.

I really never thought anything negative about having a disability until I was school age and I started finding out that people had low expectations about my future.  When I would say I was going to grow up and have a job, for example, the teachers would look at me funny and say, “Oh?  That’s nice.”

It also bothered me that people at school assumed I lived in a group home or nursing home.  That really confused me.  I didn’t realize how fortunate I was that I got to stay home with my parents while a lot of disabled kids weren’t able to do that.  As I got older, I learned that my mother was one of those people who didn’t get to be raised at home.

AP:  Tell me about your mother.

D.B.:  From the age of about three or four until she was about fifteen, my mom lived at Gillette Hospital in St. Paul.  She only got to see her parents about once a year.  She met her little brother for the first time when he was five.  It was hard on her.  Things like not seeing her little brother hurt her a lot. The only fond memories she told me were about the other disabled kids that she became friends with. Still, she didn’t complain about her childhood.  I think because she knew that her parents never meant to hurt her, they just wanted what was best, unfortunately the doctors told them that the hospital was best.

I think it was the era she was born in.  She was born in 1934, the oldest child of farmers in northern Minnesota.  The doctors pressured my grandparents to put her at Gillette.  They said that because my mother was disabled, she would be better off in the hospital.  But my mother actually had OI a lot less severely than me: I think in her life she had around 50 fractures, were I have had around 300.

I really admire my mother because even though she went through so much and had every reason to be completely oppressed and inactive,  she wasn’t. She left her little town and moved to Minneapolis by herself, got her own apartment, finished school, found a job, was very social with
her friends and got married.

AP:  How did your parents meet?

D.B.:  They belonged to a disabled organization of bowlers.  My dad was one of the few people who drove, and he would often drive my mom home from bowling.

AP:  Even nowadays, people with disabilities are often not expected to have intimate relationships and can be frowned upon for getting married and having children.  Do you think your parents had to deal with this type of discrimination?

D.B.:  Yes, definitely even more so because they had a disabled child.  When my older sister was born everyone was just relieved that she was able-bodied. But when I was born, some people told my mother that she was selfish to have had another child.  They said she should’ve been
happy with her one healthy child.

At other times, I think people thought my parents weren’t fit to be parents because they were disabled.  When I was a year old, I had been having a lot of fractures and every time I did my parents would bring me to Gillette hospital.  There was a nurse there who alleged child abuse she didn’t believe OI could make my bones break this easily and said it must be abuse so the hospital wouldn’t let me go home.

AP:  That must have been hard for your mom, especially since she was raised at Gillette.

D.B.:  Yes, I think that was part of the intimidation she felt because when the hospital said that she couldn’t bring me home, she thought there was nothing she could do.  Luckily, my mom had a home health aide who got really upset when she heard what had happened.  This aide just
marched into the hospital, scooped me out of bed and took me home.  I never went back to Gillette.

AP:  Where you mainstreamed in schools?

D.B.:  No, for most of elementary school I was segregated in a school for the disabled    it was more like daycare.  We had to ask them to teach us things.  For example, in third grade, myself and two other students wanted to learn to write in cursive.  They hadn’t taught us because all the
other kids in class were more severely disabled and couldn’t use their hands to write.  So, the three of us eight-year-olds had to get together and ask our teacher to teach us how to write  or we wouldn’t ever have learned.

I feel like that school conducted business the way it did because there was this underlying understanding that disabled people are never going to live normal lives or amount to anything, so we didn’t need to know these basic skills.

In high school, when I did finally get mainstreamed, I saw how far behind I was in basic skills. I remember my English teacher made a list of punctuation marks on the board and the other kids knew what they were, but for me it was like another language.  I was so embarrassed I didn’t want to ask for help.  Eventually, they said I had a learning disability.  I often wonder if my learning disability is real, or if it’s a product of my lack of early education.

AP:  Do you have any closing statement?

DB:  The disabled community needs to learn: there is one.  Last summer,  I was telling one of my clients about Leah Welch, and how she was a leader in the disabled community.  My client stopped me in mid sentence   he said, “Disabled leader?  Disabled community?”  He was shocked!  It really struck me then, how distant the disabled community is from one other.  We are brought up in an able-bodied world, ashamed of our disability, and therefore ashamed to make contact with one another.

For example, when I was in college, some people in the Disabled Students Organization decided that they wanted to rename the organization to something without the word disabled in it.  Every other minority organization in the school identified their minority in the title (such as the African American’s Student Organization) but we didn’t want to be known as a group of disabled people.  That’s how ashamed we are of who we are.

People with disabilities need to get together more.  Most people with disabilities don’t even realize that the PCA program wasn’t given to us, but that the disabled leaders in our community fought to make it happen.  We all don’t have to be on a mission, but we do need to unite and
embrace one another, if we are ever going to overcome our oppression and loneliness.