Honoring Our Families, and Ourselves: Refining the Narrative of Families of People with Disabilities

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My mother loves me.  I know this because she made a specific point of leaving me a New Year’s message today with that important information.  My father loves me.  I know that because, while I haven’t heard from him today, I do hear it from him on a very regular basis.  Moreover, I know that my parents love me from their actions, whether it’s driving a few hours to see me and focusing a large portion of that visit in helping me around the house, sending me a check specifically so I could have nice food to eat around a holiday, or simply the consistent interest in my life, I know that my parents love me. I’m pretty sure that this makes me neither entirely unique nor entirely common.  Many people have wonderful loving parents, while many, unfortunately, have parental relationships defined by abuse, neglect, or indifference.  The former are an immense leg up on the road to success regardless of circumstance, the latter can be a source of trauma, and even an obstacle to overcome in achieving life’s dreams.  Both themes can be part of the real experience of the person living them.

It’s a common thing among a certain class of disability advocates speak of the important role of the family.  It’s a fairly common tactic to speak of the effect of disability issues on the family when pushing for supports and to extol the virtues of family support in telling success stories.

Recently, I’ve seen frustration expressed with this narrative, on the part of some self advocates, who have either had negative or abusive home lives, or know someone who has.  Some were physically abused, others the target of such pervasive family ableism that only the strongest extra-familial support network could help them to see their own self-worth.  They get tired of hearing about families playing a critical role in success, because it wasn’t their story.

It seems to me that the real conflict is around mythologizing any area of disability.  At the root of any myth is that the target population is “other” and can therefore be defined categorically rather than individually.

I think it’s fairly well-established that people that come from strong supportive families (which can include many different structures, but share the common theme of love and support) have, on average, greater success than those who do not.  Certainly, those who do and achieve success often attribute some part of that success to their family.

That said, there are many other paths to success in the human experience.  I think that the discomfort is that the narrative somehow assumes that all successful people with disabilities come from strong families.  Some do, some don’t.  Those who do usually appreciate their good fortune, and those who don’t have found other ways.

I think then that the key is not to downplay the role of family in the success of certain people with disabilities, but to avoid fitting individual lives into a mythos in which they do not fit.  See the person, not the myth.

To me it’s something similar to the debate around what the disability community colloquially calls “inspiration porn” the horrible literary, artistic and sometimes even journalistic genre which paints the lives of people with disabilities as a great inspiration to the rest of the world.

On the one hand, I agree with the late, great Stella Young that “I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.”  Living with a disability should not be, in and of itself, considered an inspiration.

Going to the other extreme, however, Franklin Delano Roosevelt led the country out of the Great Depression, through the Great War, and, though he wouldn’t live to see it, with Social Security and the alphabet soup of depression programs, planted the seeds of Lyndon Johnson’s Great Society and even President Obama’s stimulus recovery from the Great Recession.

Looking at the life of FDR, I would be inspired by all that he managed to accomplish, whether or not he did so from a wheelchair.  That he did it from a wheelchair does inspire me, perhaps, just a little bit more.

I think the distinction is that I’m inspired by what FDR actually accomplished, including doing so with the added difficulty imposed by his disability, not by some fantastical perceptions of ordinary life transmuted into inspirational achievement simply because the person living it has a disability.  This allows me to laud his achievements, while also disapproving of several of his geopolitical decisions and even his attitude around issues of disability.  He’s a real man, who did great things but made mistakes, not a mythical paragon.

In essence, any time we embrace myths, whether uplifting or depressing, we risk losing the underlying human being.  This is terribly painful for individuals whose lives completely depart from the mythos, including the many with difficult family lives expressing discomfort over the near deification of the family role in current dialogue.

In honesty, it’s also difficult for those of us who had good family lives.  My family was and remains wonderful, and I will forever be grateful for their role in my life.  That said, when people seek advice on familial interactions where one has a child with a disability, sometimes I refer to the positive things that my family did, and sometimes I have to use our mistakes as examples of what not to do.  No family is perfect, and part of the problems with a fictional role is that it leaves no room for nuance.

Lastly, it’s destructive to the family members without disabilities.  I have at least one sibling who takes great pains to emphasize the normalcy of our sibling interactions.  This sibling will emphasize the real sibling relationship, working hard to distinguish our relationship from either the motif of long-suffering martyrdom or that of rose colored admiration.  The sibling strongly rejects any attempt to define our relationship to fit someone else’s picture, and I know that the need to do that does not come without frustration.

So I humbly offer that we should continue to emphasize the important roles of family in our advocacy, both because it’s effective, and because the contributions of those families that work so hard for their family members with disabilities should not be overlooked.  At the same time, let’s take pains to acknowledge that people with disabilities come from a wide range of real families with a wide range of experiences and try to focus our narrative on the real experiences of real people so that we, in so doing acknowledge everybody.