From Kate’s Desk
I’ve lived in the ‘developmental disability field’ my entire life, which means even before the field became a field. I have no memory preceding the push, fight, and court cases forcing the issue of the ‘rights’ of people with <significant intellectual and physical> disabilities to live in their native communities, without incarceration (for the ‘crime’ of disability), free from forced segregation, excision, and warehousing. The field is part of my identity, part of my personal narrative.
The history of disabilities in America includes some of the following memorable scientific and sociological ‘progress’ from 1960’s through the 1980’s. For example,
- diagnosis and removal from the population — excision, sterilization, and eugenics and involved court cases such as the infamous Buck v Bell.
- separation with utility — experimentation to make the segregated population “useful” despite their segregation and “pay their way” which resulted in the National Research Act (Pub. L. 93-348), creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.
- poster children — fundraising and monetizing the “pity product” to fund curative research (see the history of the Disability Rights Center)
- litigation for liberation and “mainstreaming” — Brown v Board of Ed and The Right to Education
- community and socialization — Olmstead and ADA or “Community Integration”
The Disability Field is a Disability “Rights” Field, litigious and subsequently political by historic reality. Over the decades, we’ve finely honed “professional” disability activists — self-advocates, family members, and amici who learn to speak politics with 2 minute testimonials, catchphrases, and passioned pursuit of federal and state funding to achieve “everyday lives” “just like us” –fighting for targeted funding for sufficient and appropriate supports so that they can be as independent as we are — radical autonomous, self-directing causal agents.
Over the course of decades contemplating our lives (my life, my brothers’ lives, and the lives of other family members as we all pass through life with some disability temporary or permanent, born or on-set.) through the looking glass, I find myself repeatedly asking a different question:
What does it mean if we assert the primordial truth, that we are all already human? No threshold to cross, no measurable hurdle to leap, no admission required. They are we. Already. Human.
The form of personhood commences with dependence and continues on in relation. At the same time, while being an individual self, the individual person is inescapably in relation to others. Thoreau’s experiment, after all, only lasted two years. We are not meant to live in isolation — touch deprivation, for example, can lead to a failure to thrive. Or, for a radically different example, U.S. Marines live according to the permanent brotherhood code, Semper Fidelis.
“Just like us” looks to life using Locke’s theory of rational autonomy and full independence. In this model, ‘person centered planning,’ ‘self-determination,’ and ‘social-capital’ focus and place heavy emphasis on utilitarian, efficient causal agency. The person standing alone. An emphasis on the individual, autonomous person. Empowerment of the individual. I acknowledge that we have objectified, erased, and deemed “eternal children,” people with developmental disabilities and it is justice to rectify with overt assertions of self-determination, competence, person-centeredness. Now, this is delicate and I’m probably not handling it with enough finesse. What I’m trying to say is that sometimes, just maybe, in our emphasis of one thing we forget the rest of the truth as well. And that’s what I’m trying to say … it’s time to look to a proper anthropology of the human person. Not an “exceptional” rights-based one. Let’s have human conversations.
For example, I hear again and again from all my friends — those with and without disabilities — “Loneliness and the feeling of being unwanted is the most terrible poverty.” – Mother Teresa (hat tip to NASDSP which is where I saw this quote). We must speak both of our individuality and our relationally. This is being a human person. They (who have been wrongly segregated) are we — already human, part of the human family. Welcome home.
I’m going to dare to acknowledge our truth: an unpopular truth. My brother and I live interdependent lives. (please, I’m not saying co-dependent) I, for example, live alone and yet every significant decision I make necessarily involves my brother. My brother, for example, lives in a supported living arrangement and every significant action he takes involves another. We both lead interdependent lives, the definition of that interdependency fluctuates through time. It is dynamic, not static, and it is ever-present in various measures. Separate from each other, individual to ourselves, and yes at the same time relationally interdependent. This is not because we are a “special needs family.” It is because we are family. Full stop. Family. It’s what we do.
That’s what this <revised> blog is about. It’s about being family. Interdependent (not to be confused with co-dependent). Self-in-relation.
Now, of course, let’s re-insert the political. What makes this an important topic of discourse? Overwhelmingly (as in 75-85%), of individuals with developmental disabilities live at home (U Minn, RISP). I submit that it’s time that we, in the developmental disabilities field (Alzheimer’s, TBI, and significant cognitive disabilities) start talking about navigating our very human and interdependent lives. Living within families. Giving and getting supports through family members or within the family homes.
I look forward to our conversation.