Most children with a disability are not raised by parents or extended family who have a disability. It can be really hard to learn how to be Disabled. When I use the word Disabled here, I mean it in a cultural sense. Yuh, Disability is a culture! No matter what your disability, there is a way of being and identity that transcends what a disability is. That is not to say that someone who uses a wheelchair has the same experience in the world as someone like me who appears to be abled bodied and benefits from able bodied privilege, but there are still some themes, values and ways of being that tie people with disabilities.
If Disability is a culture then it must be transmitted somehow, right? For most ethnic groups it is transmitted through family, community, music, stories, spirituality, etc… When you are born to a family that does not hold the same culture as you, you have to find it elsewhere. The Gay/Lesbian/Bisexual/Transgendered (GLBT) community is a good example of this. If you are part of the community you usually learn about your community by finding it. For people with Disabilities (I am going to capitalize in some spots and not in others), there is no neighborhood. Last I checked we didn’t have a Lady Gaga or Tupac who reflected our experiences in their popular music (because God forbid they finance that album). Sometimes I even wonder about the general cohesion of our community! I have seen my wheelchair using friends get dissed or dis other wheelchair users on the street! WTF! These ramps aren’t big enough for the two of you?! (well, ya. They actually might not be)
Then to add on top of all of that, we have the disability hierarchy. I know other communities and cultures also have their hierarchies as well and that this is not just a disability thing. As a person with a Learning Disability, I have not always felt fully welcomed by hardcore intellectual Crips who become frustrated with my dysnomia and even mock it. So, yes! We have a long way to go in creating a Disability culture where everyone in disability community feels they are a member.
Unlike the common experience of a person with a disability, I learned how to be disabled and integrate that identity from my family. I was born to parents who both brought Disability experiences into the equation. This is my story of how I became Disabled.
My mom’s mother had polio as a child and lived with the after effects of it throughout her entire adult life. Ma, as we called my grandmother, had “polio in her back” as it was explained to me. She used a body caste periodically throughout her life. She would tell me stories about how the boys in high school would knock on her brace and say “anyone home?” and how awful this was for her. My grandmother, also experienced chronic pain because of her “bad back.” To go along with all of this was my grandmother’s extreme anxiety and what I assume was obsessive-compulsive disorder which manifested in checking oven knobs and doors nightly and taking 15 minutes to bless herself after saying the rosary (making it a ritual to the second power).
Granted, my grandmother had a lot she had to deal with, but she could be such a pain in the ass. I think from a very early age my grandmother learned the secondary gains of having a disability (the polio, of course! The anxiety disorders were totally not something that she talked about or had a name for). My grandmother was born to an Italian American family of four children. My oldest great aunt, Teresa, was really Ma’s half sister. Her father died when Teresa was practically a baby. My great grandmother quickly married and had three additional children. Next came my grandmother, her brother and then a younger sister. I am sure that my Aunt Teresa had relatives who overcompensated for the death of her father. I am sure that my youngest great aunt Angie received the attention that a baby often gets in the family. And then there was the boy! In many Italian families there is a special place for the boy. In fact, I have heard little girls be called “popalinas” and little boys referred to as “pishalingdos” (keep in mind my family immigrated at a time when Italy was still very divided linguistically and regionally and I am sure that these terms reflect the very worst in Garibaldi’s proper Italian-ontop of my dyslexic phonetic translation). Translated, popalina, according to my Auntie Norma, means“she with the underdeveloped breasts.” Pishalingdo , according to my Auntie Sunie is translated to “golden penis.” Girls, in case you don’t know where you stand, this might give you a good indication! My grandmother, with the underdeveloped breasts and being a middle child, had to stand out somehow. I believe that she did this by calling attention to her disability.
Throughout my life and the even my mother’s, you could not ask Ma how she was, without her running through a list of ailments. Some related to post-polio back issues and later in life her hearing loss, heart problems and the list goes on. If you said you had butt issues she would tell you that “it feels like a red hot syringe is going into her colon” (a direct quote) Charming for lunch time conversation with the waitress at the Coffee Shop! The attention that my grandmother received was not the only secondary gain. Even better in her eyes were the prescription pills that she popped like tic tacs. During middle childhood, I once counted and I am pretty sure that my grandmother popped eight Valium or Percodan in one day. She went from somewhat coherent to mush mouthed within the half hour of People’s Court that she forced me and my brother to watch on our visits.
The image of disability I learned from my grandmother was negative. People use disability to get stuff and if I wore my disability on my sleeve as she did, then I risk a rabbit hole of Disability narcissism. Did I need this accommodation because I really needed it? Or am I asking for it for some secondary gain? Society already makes it difficult to ask for what you need, then you add a malingering grandmother to the equation, it can mess you up a little bit.
Luckily, my father was a very different image of disability. On my dad’s side of the family, I can say that I am four generations Disabled. My dad is hard of hearing most likely due to something called Alport Syndrome. My grandfather and his mother were also hard of hearing. Perhaps it goes back even further, but I can confidently say that on my dad’s dad’s side, we have been Disabled for as long as we have been Americans (4 generations off the boat from Italy). In school my dad would sit in the back of class with a box that amplified what the teacher was saying. Good idea 1950s public schools! Put the kid with the hearing disability in the back of the class where he can’t lip or speech read—that’s effective teaching! Doctors at the time thought that radiating kids would be a good idea, so he received a series of radiation treatments to help cure his hearing. Did it work? Ask him when he has his hearing aids off and you will get the answer. Who knows what impact that had on the kids with disabilities that they did that too! When my dad went to see his high school counselor, she directed him to a vocational track instead of a college one, a common experience of many kids with disabilities. My father was also driven to Walnut Creek from Alameda by my grandfather who felt that he could get the best assistance from a clinic out there (approximately 45 minute drive). This was the same drive that my dad would take me on to see my favorite speech therapist Elaine when I was in middle school. For good and for bad, my father’s own experience of disability impacted on his parenting and transmitted to me.
My father’s family laid a foundation for parenting a child with a disability. My mother married and accepted someone with a disability. So when I didn’t talk like most kids at age two and a half, my parents knew to get me help for my articulation issues-especially after I refused to speak after I caught on that my mom was fake understanding me when I talked. These speech difficulties were early signs of my language based Learning Disability (also known as a Central Auditory Processing Disorder).
One story about my father stands out the most. It was when he was coaching my girl’s softball team in the sixth grade. My dad was giving the girls a “coach’s speech” on the first day of practice. He was loudly lecturing to the girls about the expectations of being on the team. For some reason, my dad was shouting like we were the Duke Basketball team and he was Coach K. He told us, “I AM DEAF! SO YOU ARE GOING TO HAVE TO SPEAK UP AND LOOK AT ME WHEN YOU TALK TO ME.” I remember being mortified by the statement. Why would you openly talk about your disability like that?! I looked around to see who was laughing at him and the girls on the team didn’t seem to care (assuming they were listening to him).
What I learned that day was about self-disclosure, also known as advertising (as they call it in the stuttering world). My dad told the girls that he had a disability and how to react to him. How fucking simple is that! Now whenever I do public speaking or go on job interviews I do the same thing, I just don’t yell it. I will say something like, “I stutter so you will just have to wait with patient anticipation for all my good ideas.” I learned this directly from my father.
I suppose I learned from my father how to be the Disabled person I want to be and from my grandmother I learned the Disabled person that I don’t want to be. It is a line that we walk sometimes of calling attention to ourselves from a narcissistic place to calling attention to ourselves because we need an accommodation or help. I was fortunate to be brought up in a family where these issues were at the family table with my self-centered grandmother droning on and on about her many illness (real and feigned) and my father who had the ability to turn off his hearing aid and tune it all out. I was able to take different aspects of their experiences and make it my own.
Picture: My father in the background coaching my grammar school CYO team. Note my horrible basketball stance.
Picture: My grandmother holding my brother with neck brace on. Oh, how she loved medical apparatuses! I sometimes wonder if she had a medicalized fetish.