First, for full transparency, I have worked in the Independent Living (IL) disability community for nearly 7 years. I am very familiar with the IL movement and its philosophies, and I wholeheartedly agree that all people with disabilities deserve respect, dignity, and the same rights as those without disabilities. As an individual, I advocate with and/or financially support many disability organizations and initiatives, including the NYS Disability Rights Hall of Fame, Fair Pay for Home Care, National Alliance on Mental Illness, the Brooklyn Center for Independence of the Disabled, the National Council on Severe Autism, and the Disability EmpowHer network.
Further, I am expressing myself as an individual and not a representative of any organization.
I am a woman with disabilities as well as the parent and legal guardian of my 21-year-old son, Jonah. If you are new to this blog, I’ll tell you Jonah is an engaging young man with a great sense of humor. He loves music, walks, car rides, trains, swimming, hanging out with his caregivers, and visiting with his parents, among other things. Jonah is verbal and usually expresses himself in short phrases. He also has severe/profound autism, severe intellectual and developmental disabilities (I/DD), glaucoma, and aggressive/violent behaviors.
I recently received an anti-guardianship letter in my work email. After reading the letter, I decided to contact two members of the organization’s board to ask questions and offer a different perspective. During both of those conversations, I was invited to present my thoughts on guardianship, express concerns about their hardline approach to guardianship, and relate my own journey in obtaining guardianship for Jonah. I felt heard by both of these individuals, and they both agreed that further conversation is needed.
They subsequently brought my concerns to the board at large. I received an email from a board representative in which it was incorrectly assumed I needed instruction about the nature of IL and its mission. I was not asked any questions about my situation, nor was any interest expressed in my voice. After I replied to the email and tried to explain myself, I received an answer assuming I was writing solely as a parent in need of edification about Supported Decision Making (SDM) as an alternative to guardianship. Had that board representative taken the time to ask about Jonah, it would have become apparent that SDM is not an appropriate solution for him.
I decided to respond here, and talk about a few other things while I’m at it, as I don’t wish to attack any individual or group but rather address some issues I’ve observed about the disability community in general.
I am somewhat familiar with SDM but to learn more I visited the SDM website link provided in the email. I reviewed the information and watched the videos, each of which profiled an individual with disabilities making complex life choices with assistance. In every case, those profiled had far greater cognitive, behavioral, developmental, and intellectual abilities than Jonah. I am not underestimating my son. Jonah, and many others like him, simply do not possess the ability to have conversations about decision-making, to weigh the consequences of their actions, or to formulate goals, no matter how diligently they are guided.
Jonah has his own room in a house at a residential school for individuals with similar severe disabilities and self-harming/aggressive behaviors. He needs 24/7 supervision and supports, and he requires a restraint protocol for his violent behaviors. Anti-restraint and anti-congregate care rhetoric is ubiquitous in the disability community. I’d like to hear a solution in lieu of restraint while being physically attacked by Jonah or any other individual with severe autism. I’d like to know where we can house and educate our children when our windows and walls are destroyed, our families live in constant fear of physical injury, and our children are kicked out of special needs day schools because of violent and/or self-harming behaviors which cannot be mitigated.
With the right support, some insist, everyone can live independently in the community. That sounds great, except the level of support Jonah needs is not only unavailable – it’s nonexistent. In fact, he is ready for an adult program and there is currently nowhere for him to go. These realities do not make me pro-institutionalization, pro-congregate care, pro-restraints, pro-guardianship, or pro-nursing home. I am frustrated when parents are dismissed as short-sighted or, worse, are attacked by those who seem to believe there are no people with severe autism and severe I/DD. There is a pervasive and condescending anti-parent tone to many disability conversations and conferences; while I agree that choices made by an individual should supersede those of a parent, parents need not be perceived as enemies by default.
I most certainly support the right of all people with disabilities to practice self-determination. But possessing the right to do something isn’t very useful if you don’t also have the ability. Some individuals with disabilities simply can’t make the choices that the disability community so ardently insists they have the right to make. I challenge anyone to offer Jonah SDM services. I challenge them to make a video about Jonah, and in that video present important life choices to him, using PECS or any other means of accessible communication. Please quote his responses, verbal or otherwise. And don’t forget he may physically attack you at any time during the process.
Of course, I wouldn’t expect anyone to do any of that. People like Jonah – and those more severely impaired than Jonah – don’t fit into the preferred narrative. It’s easy to see why. Their dependencies are inconvenient and their stories aren’t pretty. Most autism groups look right through them, and most self-advocacy networks seem embarrassed by them. Too many disability organizations claim to represent ALL people with disabilities – but they don’t want people like Jonah on their websites. They don’t want people like him in their videos. They don’t want to see people like him at all.
To deny the existence and experience of individuals like Jonah is an egregious offense on the part of any disability community that calls itself inclusive. If you refuse to acknowledge him, you’re not alone. The significant population of severely I/DD individuals is almost always overlooked. I’m used to that. But I’m tired of seeing them swept under the rug during these important conversations. It’s as if we advocated passionately to get these individuals out of workshops and Willowbrook, then turned our backs on them completely.
One can support the IL movement AND allow for guardianship, restraint protocols, and differing living situations if necessary and, most importantly, where there are no workable alternatives. These things are not mutually exclusive. I’m proof of that, and I’m deeply disappointed that anyone in the disability community needs reminding that people like Jonah exist. Their unique needs are just as valid as those with higher level cognitive, behavioral, and intellectual abilities. It’s important to remember they cannot advocate for themselves to say so – which makes them all too easy to ignore.
If the very disability community to which they belong won’t acknowledge them, who will?
Until the National Council for Severe Autism (NCSA) was formed, I didn’t feel people like Jonah were represented anywhere. NCSA’s guardianship position statement says, in part: Guardians provide an invaluable role in maximizing the quality of life of severely autistic individuals, and NCSA supports guardianship as a fundamental protection for this vulnerable population. The statement also points out some important concerns regarding SDM.
I stand by my decision to obtain guardianship of Jonah as the best and most caring, logical way to ensure he enjoys life as independently as he is able, with dignity, in the least restrictive environment.
I am not asking the disability community to change its intent to ensure people with disabilities have the right to live and work independently in the community, lead others, and have self-determination. I agree with that important mission. I also support the fight for fully accessible communities, and I hope someday my son can live in the community with the supports he needs.
In the meantime, I do wish to see kinder, more respectful and open-minded discourse with individuals who question a disability organization’s stated beliefs. I do wish to see changes in the disability community’s thinking and rhetoric to reflect full inclusivity, crafting language that acknowledges all populations of individuals with disabilities and provides exceptions to some of the hardline beliefs which, as they stand, are both exclusionary and ableist.
Nothing about us without us. That means all of us.
The Never Normal 