No “Because” but Love—Intellectual Disability, Identity, Representation, and Value

Autism and disability pride movements assert unique cultures and identities. Can intellectually disabled people be more openly and equitably represented in them—and also better develop intellectual disability as a unique, empowered movement all its own?

 

Nicholas Hemachandra at Curtis Creek, North Carolina, May 2020

Nicholas Hemachandra, 19 years old, May 2020

When I tell my intellectually disabled and autistic 19-year-old son, Nicholas, that I love him, he often responds with “because.”

This response is relatively new, first happening over the past few months.

“I love you, Nicholas” … “because I’m your son.”

“I love you, Nicholas” … “because I’m Poppa’s guy.”

“I love you” … “because I’m the best.”

“I love you” … “because I’m smart.”

“I love you, Nicholas” … “because I’m so kind and loving.”

Slowly, too slowly, I caught up to what was happening. Nicholas needed a reason for him to be loved—for him to be lovable.

I’ve started to argue with him, gently.

“There’s no because in loving you,” I tell him after he offers up another “because.”

“Yes, you’re my son, and yes, you’re my guy, and yes, you’re kind, loving, and smart—I’m so happy that you’re my son, and I love all those things about you. But those things aren’t why I love you.

“There is no why. I love you.

“I love you because you’re you, exactly who you are and as you are. Really, there is no ‘because’ at all. We don’t need one.”

Nicholas has started to pull back on the “becauses” now.

But I still have to come to terms with the messages Nicholas has been receiving from me and from the world that made him think—and feel—that loving him requires explanation.


Assumption and Subsumption, Not Representation

A year or so ago a good friend told me she’d noticed I was increasingly using a language focused on intellectual disability in my conversations, writing, and work, rather than having my primary emphases be on autism, neurodiversity, and more general disability.

She was right, but I was a little resistant to recognizing it as true, perhaps because I see this movement less as a natural progression of my advocacy and thought and more as a failure of my earlier intellectual bandwidth, imagination, and compassion.

I am not alone in these deficits, unfortunately. Writing and advocacy around intellectual disability often gets adapted by and subsumed into other advocacy and movements.

For example, neurodiversity writers and autistic activists and organizations often say they are the ones who have the most in common with autistic intellectually disabled people and so who best represent them in voice, substance, and desires. Autistic people sometimes say that variability of intellectual capacity is common to many on the spectrum, whether they are diagnosed as intellectually disabled or not, and more is shared than is different.

And there’s real truth in that.

But what’s different matters.

In much the same way, the broader disability identity and rights movements claim the intellectually disabled as their own. The challenges, discriminations, and injustices disabled people broadly encounter in their lives both parallel and encompass those faced by intellectually disabled people specifically, they say.

Family members, too, talk about the primacy of what’s shared with their intellectually disabled kin—in shared homes and lives and in communal and familial cultures. Who is able to speak best about the interests of intellectually disabled people, who cares about them most, and who represents them more unfailingly than their own families?

And there’s some truth in that, as well.

But there’s also an answer. The only ones who can authentically represent the intellectually disabled are intellectually disabled people, whether mild, moderate, severe, or profound in that disability, as individuals and, if they choose, collectively.

That doesn’t mean others without intellectual disabilities—other autistic people, other people with disabilities, community leaders, elected officials, school professionals, agency staff, and families—can’t advocate, champion, and work to support intellectually disabled people, as well as participate in dialogue about what serves them best in society, in local communities and settings, or in a particular life.

It means that doing so isn’t representation. Just saying they’re included as part of a movement or even part of a family is different from the hard work and committed partnership of actual inclusion and agency—and what that requires of all of us, beginning with the recognition of genuine inclusion and agency as worthwhile, meaningful, and necessary. Advocating for intellectually disabled people is different from, less than, and less authentic than ensuring intellectually disabled people are equitably represented and participating in your decision-making processes about what to advocate for and ensuring that others are told explicitly about that equitable presence and inclusion.

I am not saying that autistic people who are not intellectually disabled cannot offer insight into intellectual disability and autism—that there isn’t significant intersection—or that the challenges for disabled people more broadly are not relevant to intellectually disabled people specifically. Rather, I am saying these intersections aren’t adequate to claim representation, or to legitimize a claim of representation, of intellectually disabled people.

For autism, specifically, I recognize that sometimes our systems, assessments, and common perceptions and notions even among autistics blur both the distinctions between autism and intellectual disability and their definitions. One expression of this is that the number of students receiving special education services in the United States because of autism has increased significantly—by more than 500 percent—since 2000, while the number of students receiving special education services due to intellectual disability has declined by about a third. In a sea-change shift since 2000, the diagnostic prevalence of autism now significantly exceeds that of intellectual disability; this change has been caused at least in part by diagnostic recategorizations. [See endnotes 1 and 2.]

But all this makes it more important, not less, that those diagnosed as intellectually disabled, both as a subset of the autistic population and in the larger ID community beyond it—including within more generalized disability—are consciously, authentically, and explicitly given full representation at the table of those broader groups of which they are part, supported in their own agency and advocacy representing intellectually disabled people within autism, within disability, and within our broader communities and world.


Identity and ID

Autistic advocates write and talk about—and assert—autistic identity. They foster autistic pride and community in social and advocacy spaces especially online and also out in local groups and meeting places and on campuses.

Disability rights makes for a rallying cry locally, nationally, and internationally, and the notion of a disabled culture has advanced among disabled advocates and now even in many service and governmental agencies.

These movements and the voices people find and assert within them have often been important, affirming, challenging, and beautiful.

But for the intellectually disabled? Beyond an often paternalistic assumption of inclusion by these movements, identity and pride as descriptors have proven much harder to come by.

My son Nicholas is autistic, and he is intellectually disabled in both his cognitive functioning and his adaptive functioning.

Nicholas can find community and identity in his autism, although it took him a while to come to greater understanding and acceptance around it and to embrace it.

He was frequently made fun of, bullied by, and alienated among his peers when he was younger. It was hard for Nicholas to get past the idea of autism as being the cause and thus as being negative, the thing that made him different.

He didn’t want to be different, and he desperately didn’t want to be belittled and excluded.

As time passed, having autistic friends and role models and attending autism camps helped. Having a few nonautistic friends eased his isolation, as well.

But, even at 19, autism acceptance is still hard for him sometimes.

And intellectual disability?

I gave the keynote address this past fall at the Autism & Neurodiversity Conference at Appalachian State University in Boone, North Carolina. Nicholas attended. The theme of the conference was personal story, and I told my story, distinguishing it from his but still recognizing how they are intertwined.

Nicholas Hemachandra overlooking Raven Cliff Falls, South Carolina, in May 2020

Nicholas Hemachandra, 19 years old, May 2020

Nicholas was diagnosed as intellectually disabled, as well as autistic, long before he had a stroke in late 2014. But some of his cognitive capacity clearly diminished then and, in certain ways, has never recovered.

My talk recapped this history. Nicholas read the speech ahead of time and approved it. But when I was on stage talking to a large audience about intellectual disability, when I said those words out loud, his smile changed. He was sitting toward the front, and he looked at me alarmed.

Often when Nicholas reads my writing about him—and he always does for approval before I post anything that includes him—the idea of his being intellectually disabled is difficult for him. It will be when he reads this article.

Intellectual disability is not something he wants to accept or embrace at all.

He recognizes we are both trying to do work to help and support people who are intellectually disabled, as well as autistic. But so far I have failed to help my son develop a framework and language that might invite greater acceptance by him of his intellectual disability.

As I wrote earlier, this has been a failure of my own intellectual capacity and of my parenting.

Even if I do so more successfully moving forward, and even if I enlist others in our shared circle to help us, Nicholas ultimately has agency and choice about his own identity—beyond diagnosis and in self-regard—agency and choice in what he embraces and claims and in what he sets aside or rejects.

The truth is the way our culture views and values people makes it harder to see intellectual disability in a non-pejorative light. Virtually all descriptors I can think of describing intellectual disability, beyond those specific words, have openly pejorative or slurring connotations.

Descriptors of intellectual disability will remain discriminatory diminishments for as long as we value people’s worth based on so-called abilities and disabilities, rather than just accepting as equal the intrinsic value of every human being.

That doesn’t mean disability doesn’t exist or that it’s not consequential in a life. It means disability, including intellectual disability, doesn’t change the value of a life.

With that as the baseline, other characteristics would become simple objective descriptors that don’t carry “good” or “bad” associations with them, but that help us learn about, care for, and love one another in the ways that best fit each person as an individual.

We’re not close to getting there collectively. But we start individually, which is how collective change begins, by considering—and if necessary correcting—our own words, thoughts, and judgments about the people we love, about the people we meet, and even about people we don’t know at all.

Intellectual disability joins autism and disability, gender and sex, physical looks, nationality, race, and religion as characteristics for which we reject discrimination and demand acceptance and full inclusion.

That culture—one in which intellectual disability makes no difference as to how we value a human being—is one I would be proud to assert and be a part of. That’s an identity I aspire to have.

And if, in that world, intellectually disabled people are better supported and empowered if they choose to find common cause, concerns, and opportunities and assert a collective identity and advocacy, I’ll be proud to support them in that movement and those rights, as well.


What Authentic Agency Might Look Like

As we long tail into increasingly specific intersectional identities, contemporary communication and common academic and popular culture condition us to base our definitional parameters on—and to identify—more with grievance than with grace.

Our dissatisfactions and perception of injury grow—sometimes for good cause, and sometimes even for good consequence—as our intersectional long tail extends and narrows. 

Ironically, who is perhaps least prone to grievance? The intellectually disabled.

But why might intellectually disabled adults need their own movement and voice, distinct from broader autism or disability, in addition to being much better and more openly represented in those movements?

We know people with intellectual disabilities suffer greater social and economic inequalities and endure significantly worse socioeconomic outcomes than those with physical disabilities alone. Eighty-five percent of intellectually disabled adults are unemployed; the employment rate for intellectually disabled adults is less than half that of disabled adults generally, which in turn is less than half that of nondisabled adults. [See endnotes 3 and 4.]

In our society, economic status typically and regrettably parallels strength and reach of voice. Just as much, it impacts our perception of the value of the voice and the necessity of its contribution.

Supporting intellectually disabled adults and children in their possible representation, agency, and advocacy requires committing to the value—the why—and openly affirming its importance and, yes, necessity; committing to the idea by developing a thoughtful process of how; and committing to the action—actualizing the how and continually reassessing the effectiveness and accessibility of the process developed. I say “possible” because no one should be coercing participation from anyone; each intellectually disabled person gets to choose having or not having such a role, in organizations as well as in families.

As a start, anyway, making authentic agency happen requires:

1. Recognizing openly the right to self-determination and participation of every intellectually disabled person in her, his, or their own life, family, and community.

2. Recognizing openly the value of intellectually disabled people representing intellectually disabled people in fair proportion to their population in whatever group or organization in question.

3. Determining the accessibility requirements of greater participation by intellectually disabled people and meeting those requirements. They might vary according to the individual, including their diagnosed level of ID and means of communication, whether verbal or not. They might include, for example:

    • Offering information that is unbiased and presented in accessible ways
    • Ensuring shared understanding of information and concepts, problems and challenges, solutions and positions
    • Monitoring the tempo of communication to include adequate time for processing, consideration, and response
    • Conducting meetings with clear structure and topic agendas distributed well beforehand and making summaries available afterward

4. Ensuring the perspectives of intellectually disabled people are solicited and supported as equally valid—so their representation and inclusion isn’t just tokenism but rather an activated value at all times, not just when it occurs to others.

So, for example, current research and diagnostic approaches estimate that no less than 30 percent of the autistic population is intellectually disabled, and some estimates are significantly higher. Explicit equitable inclusion asks autistic advocacy movements and organizations to have reasonably proportional representation of intellectually disabled autistics—at least 30 percent seems like a good starting point—and to make that representation known.

As well, we have to ensure we have shared understandings of information, of choices, of solutions, of decisions, of actions. Doing so isn’t easy: a deficit in most human communications with others of all intellectual abilities is ensuring shared understandings.

Doing so while ensuring accessibility of the communication with the intellectually disabled asks even more of us. When including people with intellectual disabilities, we have to take responsibility for clarity and accessibility in what we say and what we mean. But, again, of course, that should be true in all our communications.

And what does biased information look like? It means controlling information and choice to lead to the outcome we want. The framing often determines the outcome. This approach denies agency even if it fosters agreement.

We are increasingly inured to biased information presentations. In almost universally tribal contemporary social media and now even news media, we present our take as fact. We minimize information that may present an alternate view, or ignore it, or mock it, or most commonly revile it, rather than engage it sincerely. We limit freedom of dissent. We limit choice.

I’ll use contrary biased-information examples from when my son was in high school and there were pep rallies in the gym:

“Nicholas, there’s going to be a pep rally in the gym today. It will be really loud and there will be a lot of screaming and you’ll probably have to cover your ears. Would you rather stay in the classroom?”

“Nicholas, there’s going to be a pep rally in the gym today. All of your classmates in the school will be there, clapping and cheering with you. Your friends will be there. Do you want to go?”

Both questions would elicit an answer of yes from my son. The chosen framing was inevitably based on the educators’ preferences, typically determined by whether they had staffing to cover children in both the classroom and at the assembly. But afterward they could say to me, with a straight face, that’s what Nicholas said he wanted.

Another time a classroom assistant told me Nicholas wanted to participate in snowboarding in the Special Olympics. When I asked him, Nicholas had no idea what snowboarding was. You could certainly frame a question to elicit a yes from him about it, and apparently that’s what happened, because most of the class was doing that and it made staffing easier while offering my son IEP-required supports. But that yes did not qualify as authentic representation or consent.

Authentic contribution and consent for intellectually disabled people require not just work from everyone but also integrity in intentions and genuine openness to new information and perspectives, even ones that may be at odds with our existing beliefs, including what we think we know to be true. 

Facilitating authentic agency for intellectually disabled people requires humility. Otherwise, it’s just PR, fooling others or ourselves. With a commitment to true agency and choice, though, an intellectually disabled person can have better representation in her, his, or their own life; better inclusion and voice in broader community movements; and ultimately the choice of advocacy and pride specific to intellectual disability.

Regardless of their level of disability and means of communication, intellectually disabled individuals have contributions to make and opinions to give when offered the chance to develop and express them. Everyone needs humility, also, to keep from thinking we can know the capacities or internal life of another.

In late 2014, Nicholas had the stroke. And then in 2016, he was hospitalized for three weeks while losing copious amounts of blood and ultimately 25 to 30 pounds with what eventually proved to be acute severe ulcerative pancolitis.

Nicholas missed about two months of high school in recovery. On the first day of his return he was required to take a statewide math test. He wasn’t expected to pass it—kids in his special-education class weren’t expected to be able to do this work—but it was required that he sit through it and take it.

Nicholas had been out of school entirely for those two months and hadn’t practiced any math during that time. He had never fully regained his capacity to do certain kinds of math well after he had his stroke.

Nicholas is autistic. He is intellectually disabled. He has an obsessive compulsive disorder diagnosis. He has expressive communication disorder and receptive communication disorder. He has anxiety. He used to be self-injurious. 

He passed the statewide 9th grade math test.

It amazed his teachers.

Nicholas Hemachandra at Curtis Creek, North Carolina, in May 2020

Nicholas Hemachandra, 19 years old, May 2020

But it didn’t change or expand in any way their perception of his limited capacity or possibilities.

My son is strong, determined, and the most loving person I’ve known. He has a deep intelligence that is unlike mine, and so I find it hard to describe. I trust him. I count on him. We are there for each other, interdependently, each day. 

Each intellectually disabled person is unique, like everyone else. Nicholas would have been no less smart, in the way I know him to be smart, for having failed that test. But it showed how expectations, and assumptive beliefs in someone’s capacity, can be deeply mistaken.

I’m never sure exactly what we are measuring with assessments of intellectual disability—expression, conversion, translation, communication, convention, processing speed, accessibility—much less how much these assessments reflect or don’t reflect the things that matter most in a society or in a life.

There is tremendous diversity within intellectual disability, as there is within autism, just as much as within disability or the human population in its entirety. As people choose to cluster identity claims into various intersections and communities, we must ensure everyone has value and voice in these collectives, including intellectually disabled people. They deserve societal and group representation in equal measure to everyone else.

At the same time, too, we can step back from the identity claims and assignments and say you’re you—your value isn’t diminished or enhanced because you’re intellectually disabled or autistic or any other characteristic or aspect of identity, even while those may contribute to your voice and perspective.

You have value—we value you, I value you, and society should value you—because you’re you.


What Matters: Because Love

As I sat writing this piece tonight, Nicholas came over to sit with me, lean in, and hug me. I held him close and whispered, “I’m so proud of you.”

He lifted his head and replied, “Because I’m so kind and loving.”

“Yes—yes, Nicholas,” I said. “That’s exactly right.”

 

Endnotes:
1 See chart at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683759/
2 See https://www.ncbi.nlm.nih.gov/pubmed/26198689/
3 See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4388219/
4 See Winsor J., Timmons J.C., Butterworth J. et al., The National Report on Employment Services and
Outcomes. University of Massachusetts Boston, Institute for Community Inclusion, 2017; data as reported and cited in https://bit.ly/3fIJz7m 

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2 thoughts on “No “Because” but Love—Intellectual Disability, Identity, Representation, and Value

  1. Hi Ray,

    Thank you for this very thoughtful piece, I feel so much of what you wrote.

    You bring up really excellent questions. In my own life I spend a lot of time wondering: “How do we shift society to include & value everybody?”

    What does this look like? What are good models to learn from? How do we bring about this part of the Beloved Community? Meaning how do we create more accessible spaces, movements and communities? For everyone. No one left behind, no one left out.

    That is and has always been a big part of Autistics United. We work to create community & leadership opportunities for everyone, for all autistic folks, the full spectrum. That’s always been part of Danny’s vision & part of why I am so proud to work with him.

    Bit by bit there are people wanting to create this change in the world even as it requires conscious effort. It is work that is rewarding & well worth doing.

    I truly believe that it is not going to happen unless we are all working on it intentionally. We must make this a priority & part of our advocacy. Not everyone is there yet, some people might feel taken to task for what you wrote but you do it from such a strong place of love and you are so right- it is a call to action, not a condemnation.

    Like

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