Should policy-directed “best outcomes” from government officials and advocacy groups reduce, rather than enhance, choice for people with intellectual and developmental disabilities (IDD)—and sometimes trap them in unsafe, hostile environments?
Within the intellectual and developmental disability field these days, integrated employment, integrated housing, integrated classrooms, and integrated society are usually stated in a certain, unquestioned way as the obvious and absolute, ethically urgent, and necessary goals of policy.
Shockingly to many who work or advocate in the field with open hearts and the best of intentions, however, they are completely wrong. These goals are not designed to empower people with IDD. If ever realized, these goals instead would further remove agency from the lives of intellectually and developmentally disabled people and further infantilize them.
What should the goals—or goal—be instead?
The standard should be integration and inclusion available and supported as *choice* in all these areas and settings and across an individual’s life and societal life.
This distinction may seem unimportant at first, but it’s essential.
A well-developed and comprehensive array of choice for individuals and families in educational settings, housing, and work is the proper vision and standard, with intellectually and developmentally disabled people and their families taking the lead in helping determine what such choices include. I say “families” especially when considering that array for children and for adults with severe intellectual disabilities, although both those groups should be contributing, as well.
The array should certainly include a variety of inclusive options that hopefully are so robust in culture and supports that they attract many people with IDD to them and thrive with vibrant, joyful, holistic participation.
But, even with that, the IDD population needs to—or, rather, all the individuals within it need to—retain autonomy and agency.
They need to retain choice.
When I think about this difference in approach and emphasis, I sometimes think about Black people sitting together at the lunch table at school, colleges, or workplaces or at company picnics.
Why, when society has formally desegregated in many though not all ways, do Black people still sometimes choose to socialize and cluster together in a way that often seems isolating, exclusionary, and self-segregating from non-Black people, including not just white people but often other people of color?
Well, there are lots of reasons, actually.
But let’s shift it back to an IDD frame and, still at the lunch table, extend the idea out:
Maybe intellectually and developmentally disabled people simply prefer sitting with other people who have shared experiences, backgrounds, and culture—autistic culture, for one example.
Maybe they’re afraid of or tired of being rejected and bullied. Maybe they are afraid or tired of feeling unsafe in a forced integrated social dynamic.
Often they *should* feel unsafe. Forcing people with IDD to integrate into unsafe spaces is cruel and controlling rather than kind and including. Sometimes it’s abusive.
Many spaces aren’t safe for them. And, even more to the point, a person with IDD can’t always know when they are safe and when they aren’t, resulting in deep anxiety.
Sometimes, if someone is intellectually disabled, he, she, or they might not even understand what is and isn’t safe. But that only makes it worse, not better: the underlying anxiety from past abusive, traumatic experiences can make the integrated world be experienced primarily as a hostile place, or at least a place in which one might understandably be fearful.
Do intellectually and developmentally disabled people really want to sit at the same table with people who may laugh at or bully them; infantilize, trivialize, or dehumanize them; or still need to learn and agree not to use the R word?
The truth is: maybe. Because some desperately want to be included. But that should be their choice.
We know these deficits still exist. Maybe realizing that we still need to educate most people even not to use the R word, while at the same time telling intellectually and developmentally disabled people how great integrated settings are—so great government officials and advocates sometimes take action or bias systems to eliminate other settings—isn’t quite working as holistic thinking and planning.
Regardless: like everyone else, people with IDD should be able to choose their friends—who they spend time with and in which spaces. That’s why the appropriate goal and standard—for everything and not just lunch—is choice, with fully supported inclusion and integration as a choice option, rather than imposed inclusion and integration without choice, so people are drawn to it rather than forced into it.
Personally, I support and applaud strong inclusion programs in schools, for example, and prefer them to strong separate-setting programs. But I also recognize that a great or even good special-ed teacher is far preferable to a poor reg-ed teacher for children’s happiness and well-being, as well as for the quality of their education.
Poorly supported inclusion or a bullying or simply marginalizing environment can permanently derail school for someone with IDD. Even if they are given gold-standard supports later on, it may never track back. And the student herself, himself, or themself will almost certainly be blamed, or seen as deficient, for it not working. In schools across the country, such traumas and their consequence happen in this way every day.
It translates equally to employment, social groups, church, and residential integration.
Inclusion and integration without needed supports aren’t actually inclusion and are ineffective integration.
Instead, they put very vulnerable people at risk.
What empowers people with IDD isn’t inclusion but, instead, choice, including having the choice to reject our often terribly designed and inadequately and half-heartedly supported and funded attempts at integration and inclusion.
And it also extends to having the choice to decide against even well-designed and fully supported inclusion settings.
That’s what having genuine agency in one’s life means.
There’s also a bias in value that is pernicious in these conversations and intentions: Policies are often enacted so participants—that is, people with IDD—“live full and meaningful lives in the community,” to quote something about housing that literally came into my email queue while I was drafting this piece from an arm of my state’s Department of Health and Human Services.
Sounds good, right?
But which community is “the” community we’re talking about? There are *lots* of communities across and within “the community.” Which ones are we valuing?
The policies we enact to support community connection often openly discriminate against one of the communities. Can you guess which one we formally disregard, usually without any suggestion of recognition or embarrassment? Yes: it’s the intellectually and developmentally disabled individuals themselves.
In North Carolina, for example, there’s a supports definition called community networking. To quote the definition for this Innovations Waiver (IDD Medicaid waiver) service in the state: “Community Networking services provide individualized day activities that support the waiver beneficiary’s definition of a meaningful day in an integrated community setting with persons who are not disabled. … These services do not take place in licensed facilities and are intended to offer the beneficiary the opportunity to develop meaningful community relationships with non-disabled individuals. … Community Networking services enable the beneficiary to increase or maintain their capacity for independence and develop social roles valued by non-disabled members of the community.”
In the article Are Autistic and Intellectually Disabled People Worthwhile Community Members—or Aren’t They? I write about what’s wrong with this definition, and please read that post for, I hope, greater nuance and depth about it, with a better and fairer recognition of the challenges and complexity involved.
In that piece, though, I write that a properly corrected definition would value time and community with disabled and nondisabled people alike, so something like: “These services … are intended to offer the beneficiary the opportunity to develop meaningful community relationships with both non-disabled and disabled individuals.” And: “Community Networking services enable the beneficiary to increase or maintain their capacity for independence and develop social roles valued by both non-disabled and disabled members of the community.”
That is, having policies in which people with IDD are respected enough that spending time with *them* also counts as “community networking”—not just the time spent with nondisabled people. Because we recognize intellectually and developmental disabled people are, in fact, part of the community.
And we know time spent with them is not “less than” time spent with nondisabled people in any way.
The best time of my own life is spent with my son, Nicholas. He is autistic and intellectually disabled. He’s 21 now.
Nicholas has disabled and nondisabled friends. Over the years, I’ve seen him laugh while being made fun of by nondisabled peers, pretending or hoping they were laughing together or trying to transform it into that. I’ve also seen him cry. I’ve seen him attend autism camp and gain his own permission to exhibit “autistic” behaviors. I’ve seen nondisabled peers and older adults accept parts of him and reject others, reject him fully, or accept him fully. I’ve seen him accept and reject different parts of himself, at least influenced by those interactions with others—strangers and casual acquaintances as well as those who know and love him best.
I suspect he’ll always want disabled and nondisabled friends and value both settings exclusively with other disabled people and ones that are fully integrated and supported. But I don’t know that, and it’s not mine to know: Nicholas should get to choose what makes for his best, happiest life.
Please, let’s not reduce his choices.
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I invite you to read my articles on this site about autism and intellectual disability, including these:
- Autistic Isolation, Connection, & Joy: Never Miss Dessert
- No “Because” but Love: Intellectual Disability, Identity, Representation, and Value
- Autism Adulthood: Caring for the Future and the Present Moment
- 7 Values to Live By: Autism Across Schools and Classrooms
- Definition as Destiny: Breaking Autistic Boundaries
- Are Autistic and Intellectually Disabled People Worthwhile Community Members—or Aren’t They?
- Poppa, Do You Have Autism?
- Hammer and Screw: Autism Acceptance and Rejection
- Autism 101: Hating Your Autistic Child
- Accept or Reject: Part one of a series on autism value contrasts
- On Blackness and Autism, Identity and Essence
- Top 10 List: Things to Remember When Working with Autistic Children