Parents are part of the autistic and I/DD communities, not the enemy.
Posted May 17, 2017
At the United Nation’s World Autism Awareness Day celebration on March 31, Chair of the Committee on the Rights of Persons with Disabilities Theresia Degener argued that guardianship law “must be repealed,” comparing it to “slavery” and “genital mutilation.”
It was shocking imagery, but not altogether surprising. I’ve long been impressed by how adroitly certain disability rights advocates have simply dispatched the most severely cognitively impaired with rhetoric such as Professor Degener’s insistence that no one needs guardianship because “Nothing is impossible, as long as adequate support is available.”
Consider this 2011 blog post from current Autistic Self-Advocacy Network (ASAN) president Julia Bascom. In response to parents who told her, “If my child could write a blog post like this, I would consider him cured,” Bascom had this to say: “Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication?...Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.”
What is so notable about this excerpt – besides its peerless contempt – is that Ms. Bascom really seems to believe that the only reason individuals with extreme I/DD aren’t articulating insightful ideas is that their parents have failed them. She just refuses to accept that there are in fact many people whose significant cognitive disabilities preclude the abstract thinking, logical reasoning, and creative processing necessary to make any kind of philosophical argument, never mind write a blog post – a truly mind-boggling denial tantamount to blaming parents for not teaching their blind children to see or their paralyzed children to walk.
I ran into this attitude in person in January 2016, when I testified at an Interagency Autism Coordinating Committee (IACC) meeting on housing options for autistic adults. Afterwards, self-advocate and IACC member John Elder Robison approached me and asked why my son couldn’t choose for himself where to live. I told him that Jonah’s intellectual disabilities were too profound. Musing about it later in his own Psychology Today blog, Robison wrote, “To accept her point of view meant I must presume serious incompetence. My view – which is the mainstream view of the disability rights movement – presumes competence.”
Of course we should all begin by presuming competence, in the absence of disconfirming evidence. And let me assure Mr. Robison, Ms. Bascom and Professor Degener that no one presumed our kids’ competence more than we did, their parents. No one believed longer or fought harder for that competence. And when it became evident that it would never come, no one grieved more deeply. The day we sign guardianship papers is the most heartbreaking day of our lives. No parents want to care for their children forever; the universal goal of parenthood is to raise our utterly dependent babies into autonomous adults. So where does it come from, this assumption that we are taking on that responsibility unnecessarily?
Perhaps this misconception has a historical underpinning. Decades ago, individuals with mild or even non-existent intellectual disabilities were at times institutionalized for nothing worse than poverty or promiscuous behavior. Thankfully, that is no longer the case. And much of the landmark legislation that now protects the rights of this population – including the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) was passed under pressure from parent groups as well as disability rights organizations. This isn’t to say there are no bad parents – of course there are, of kids with and without I/DD. But, in general, we presume beneficence: we assume parents love their children and act on their best interests, because in the vast majority of cases, they do. The title of Mr. Robison’s blog post presents a false dichotomy: “Does Mom Know Best, or Do We Presume Autistic Competence?” Both of these choices are true. When we meet someone for the first time, we should never presume that he can’t communicate, understand, or advocate for himself, no matter how he flaps, cries, or spins around the room. But when a parent who has loved and cared for this young man for 17 years confirms his tested IQ of 40, minimal language and long history of aggression, self-injury, property destruction and elopement, and explains that for these reasons he can’t make what is in actuality a very complicated decision about where to live, requiring the consideration of many criteria (including location, amenities, staffing, and safety) – she should be believed.
Or, if some disability rights advocates refuse to presume beneficence, then don’t presume at all. Special education researchers Jason Travers and Kevin Ayres argued in a 2015 paper, “Decisions made without evidence, including presumptions of competence, are inherently prejudicial and therefore hazardous,” concluding that “The responsible position is to suspend judgment about the person’s competence and insist on sound (i.e., reliable, valid, verifiable) and objective evidence of current functioning in specified domains in order to deliver instruction and supports congruent with the individual’s (and/or family’s) vision and values.” I completely agree with this privileging of evidence-based assessment, which is why I encouraged Mr. Robison to visit my home and ask Jonah where he wants to live when he grows up. Parent, advocate and writer Hannah Brown calls this the “Autism Challenge”: “spend an hour, just one hour, taking care of a low-functioning person with autism.” I honestly believe this is the only way to heal the fractured I/DD community. So, Mr. Robison, the invitation is still, and will always be, open. Ms. Bascom, please come and try to teach Jonah how to write a blog. Professor Degener, you’re welcome to probe Jonah’s feelings about guardianship the next time you’re in the U.S. Accusing parents of violating their children’s human rights or comparing them to slave masters doesn’t make any of our kids’ devastating cognitive impairments go away. It just shuts down the critical conversations we as members of the intellectually and developmentally disabled community need to have about how best to meet the complex and lifelong support needs of Jonah and his peers.