Today, I want to talk about how our culture and communities—and specifically the Christian community known as the Church—are problematic with respect to how we treat disabled people. Just as the Church is sometimes unwelcoming of people that are different than us in other ways, so too it’s also often unwelcoming of disabled people. This is, of course, a very broad topic, not one that can be dealt with in its totality in the course of a chapel talk. So I’m going to focus on one just part of this larger concern, and that is autism.
Now, I don’t think that everything that I say about autism will easily translate to all other disabilities. And there are issues that other disabilities raise that may not come up for autism. Nevertheless, I think that by focusing on autism in the Church—or perhaps more accurately, ways that the Church often excludes or makes unwelcome autistics—you’ll get a sense of what the larger challenges are regarding disability in general. You’ll see that not all parts of the body are equally welcome. And in fact, I think that much of what I want to say about how the Church sometimes fails in its mission isn’t just true regarding about disability—it’s also true of other marginalized groups. I think it’s often true of how we treat people of color. Or people who don’t share our politics. Or the LGBTQ+ community. Or people from other faith traditions. But I’ll leave thinking about these parallels for you think about in the coming days.
Two other quick disclaimers. The range in which autism manifests is really broad. It’s often called a spectrum.
But I think that’s problematic. Not only does it suggest a hierarchy that often privileges those who are ‘high-functioning’ over those who have ‘severe autism’, but I think it is also inaccurate because it oversimplifies things. One person with autism can need substantial support in own domain, but in other contexts their autism might be unnoticeable by others. Rather than being a spectrum, I think autism makes more sense if we think of it like a multi-dimensional matrix. So what I say about autism may not apply to all cases of autism. We shouldn’t expect one autistic’s experience to represent all autistics, any more than we expect one woman to represent all women’s experiences.
Second, a few words about the language that I’ll be using. In talking about disability it’s common to differentiate “person-first” and “identity-first” language. Talking about “a person with a disability” or an “adult with autism” are instances of person-first language. It’s a way of attempting to, by our language, focus on the person’s humanity and individuality rather than reducing their identity to their disability or diagnosis. As theologian John Swinton says, using person-first language puts the “focus on the person as opposed to the label.” Many groups promote person-first language. Those of you, for instance, who are education majors, have likely been told that it’s the preferred approach.
Contrast this with identity-first language, such as “a disabled person” or “an autistic adult.” It’s often said that we ‘shouldn’t lead with the disability.’ But it’s important to note that the majority of disabled adults prefer identity-first language. Most Deaf individuals, for whom their deafness is part of their culture and language, prefer to be called Deaf rather than “person with a hearing impairment.” Approximately 80% of autistic adults prefer to be called just that, autistic, rather than ‘a person with autism.’ Jim Sinclair, an autism-rights advocate who helped form the Autism Network International says that “it is only when someone has decided the characteristic being referred to is negative that suddenly people want to separate it from the person.” My friend and philosopher of disability Elizabeth Barnes argues for identity-first language as follows:
I used ‘disabled people’ rather than ‘people with disabilities’ because ‘disabled people’ mirrors our usage of other terms which pick out minority social groups—for example, we say ‘gay people’ not ‘people with gayness’. It’s sometimes suggested that we should say ‘people with disabilities’ because ‘disabled people’ suggests that disability somehow defines the person. But I simply don’t think that’s true. Saying that someone is a disabled person doesn’t mean that disability defines them any more than saying that someone is a gay person means that sexuality defines who they are.(The Minority Body, 6)
For these and other reasons, I use identity-first language, although I know that that’s a preference that’s not shared by all disabled individuals.
While I want to talk about how the Church fails in its mission when it, as it all too often does, excludes autistics, I’ll start with general culture. I do this for two reasons. First, even if some of the problems in our culture weren’t also found in the Church, we’re called as Christians to engage culture, not separate from it. To redeem it, not retreat. So even if the problems I’ll talk about are just “out there”, we need to be actively working to undermine that exclusion. Second, our culture shapes us in the Church more than we’d often like to admit. We have, in fact, internalized the wider culture’s devaluation of autistic lives. Even if we don’t like to admit it. In fact, things are sometimes harder in the Church given the way we often think our intentions are all that matter or how calls for forgiveness are used as weapons to silence certain voices.
In general, the history of how our culture has treated those with disabilities—including autism—isn’t very pleasant. [Content Warning: What follows contains discussion of violence against autistics, including sexual assault.] Things were never good, but in some ways (and only in some ways) things were better earlier in our country’s history because of how extended families and close-knit communities would collectively provide care. Granted, that didn’t always happen. But things changed in the 20th century given economic and industrial pressures. Then we saw the rise of large institutions and effectively outsources the case of disabled people to these institutions, often in the name of ‘effectiveness’.
The number of these large institutions increased dramatically. Their populations increased by 50% between 1950 and 1970 alone. It was widely recognized that the expanding populations in these facilities led to numerous problems. As one state-level administrator noted at the time,
As the worthy cases spill over into the corridors, the already inadequate personnel-to-resident ratios become impossible and there is little the staff can do except to fold laundry and keep a fire watch.
But little was done to fix it in part because the problem was “out there” and not in our communities. These institutions helped create an illusion of life without disabilities. But eventually the degree of over-crowding, abuse, and dehumanization within their walls was brought to light.
In 1972, investigative journalist Geraldo Rivera wrote an exposé, Willowbrook: The Last Great Disgrace. It focused on a state-supported institution for children with intellectual disabilities on Staten Island in New York.
Willowbrook housed double the population it was designed for. Individuals slept on the hard floor, had rags for clothes, and were malnourished. The resident to staff ratio was nearly 70-to-1. According to Rivera, “one hundred percent of all residents contracted hepatitis within six months of entering the institution.” That’s in part because many patients at Willowbrook were intentionally infected with hepatitis, part of a government medical experiment for which they did not give consent and from which they did not benefit. Rivera’s reporting contributed to a rising chorus of voices advocating for institutional reform. Willowbrook closed in 1987. I’ve talked with an autistic man who was in Willowbrook for 7 years because his mother thought it would be best for him. The abuse he endured there was so bad that he refuses to talk about his time there.
But the violence against autistics isn’t just in institutions. The Southern Poverty Law Center refers to violence against disable people as “the invisible hate crime.” There’s an entire book dedicated to the subject: Mark Shelley’s Disability Hate Crimes: Does Anyone Really Hate Disabled People. Jack Levin, professor emeritus of criminology and sociology at Northeastern University, helped coin the phrase ‘hate crime’ back in 1993, with his book Hate Crimes: The Rising Tide of Bigotry and Bloodshed. He’s since come to regret the phrase, since many of the things called ‘hate crimes’ aren’t actually motivated by hate. They can be caused by indifference or dehumanization those who are different than we are. And much of our culture sees autism precisely as ‘other’. Levin prefers the term ‘bias crime’, which refers to when a crime targets a person because of some feature of that individual’s identity or perceived identity.
For instance, a perpetrator who selects a victim because of their disability identity [or even perceived identity as disabled] is committing a bias crime, even if they do not (ostensibly) ‘hate’ disabled people. The mere fact that someone is targeted because of an identity is enough to prove that the perpetrator has committed a bias crime. (Shelley 2009, 17)
(Think here of some of the ways that climate activist Greta Thunberg has been targeted for her autism….) Whether or not such crimes are motivated by outright malice, indifference, or simply the belief that disabled lives are less valuable than non-disabled lives, the data is rather striking.
A report by the UK’s Equality and Human Rights Committee indicates that “disabled people are four times more likely to be a victim of crime than nondisabled people” (Shelley 2009, 17). According to a recent analysis of the National Crime Victimization Survey by the US Bureau of Justice, “people with disabilities are at least 2.5 times more likely to experience violence than those without. And,” the report continues, “much of that violence is extraordinarily cruel and sadistic.” The percentage of crimes against disabled victims involving rape is 30x higher than the percentage of rape among hate crimes against the non-disabled (Shelly 2009, 63). “One study found that 83% of women with developmental disabilities will be raped a least once in their lifetime, and that more than half that number will be raped at least ten times before the age of eighteen alone. That almost 40% of men with developmental disabilities will be raped at least once” (All the Weight of Our Dreams, 118).
For all the discussion of violence against people of color by police, some scholars suggest that police violence against disabled individuals is actually more prevalent. And disabled people of color are at the highest risk of violence. As Morenike Giwa Onaiwu writes in the introduction to All the Weight of Our Dreams: On Living Racialized Autism (xii),
We—those of us who exist at the intersection of disability and race—aren’t treated as if we are ‘real’. Little concern is paid to the innumerable factors present in our lives that impact how we view ourselves and the world, to how we ourselves are viewed by the world, to our strengths, to our needs. This is a grave injustice. Our lives and experiences cannot be splintered or subdivided into neat little categories; race over here, disability over there. We whose lives are greatly impacted by both racial and disability matters deserve to be more than tokens one day and non-existent the next.
The first of March each year marks the ‘Disability Day of Mourning,’ when “the disability community comes together to remember the victims of filicide – people with disabilities murdered by their family members” and caregivers in vigils around the world. Here’s the list of victims, so far, from this year alone. Nearly half of parents who kill their disabled children serve no jail time at all (Far From the Tree, 292).
Another study showed that crimes against disabled victims result in a conviction only 5% of the time, compared with a conviction rate of 70% against non-disabled victims (Shelley 2009, 6). Criminal penalties for crimes against disabled victims often result in ‘softer’ or more lenient sentences (Shelley 2009, 10f).
This data also likely underreports bias crimes against disabled individuals since not all US law enforcement agencies classify crimes in their jurisdiction as disability hate crimes.
But hopefully none of us are going to be the perpetrators of such violence. (I think that’s actually very plausibly a problematic idealization. The data from the social sciences about who commits violence is pretty brutal.) But let’s set aside physical violence for a bit. It’s still the case that we often think of autistics as less valuable. Now, we might not like to admit this. But it’s true. Think of how parents often react to an autism diagnosis. Consider. Part of the article “Don’t Mourn for Us” written by Jim Sinclair, the autistic advocate I mentioned earlier:
Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives–but it has nothing to do with autism.(“Don’t Mourn for Us”)
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive.
This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn’t about autism, it’s about shattered expectations.
I confess that these words hurt me to read, but that’s because they convict me. I remember sitting in the parking lot of a neuropsychologist’s office after getting our son’s autism diagnosis. Now, we’d suspected for over a year that he was likely autistic. But I have to confess that one reason for my tears—in addition to uncertainty and fear for the future—was my own expectations. (But we can confess our moral failings in a place like this, right?) At the time, I didn’t have the resources to understand what Sinclair is saying. But since then, by listening to autistic voices and reading autistic authors I’m come to see what was problematic, even if understandable, with my initial reaction. Especially if all parts of the body are just as God wanted them to be.
Another illustration of how we devalue disabled lives. This one is about Down syndrome, not autism. But the point holds for both—and there’s a fairly high correlation between Down syndrome and autism. Here’s Christian theologian Joseph Fletcher in the Atlantic Monthly in 1968: there is “no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanatorium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person” (Far From the Tree, 181). I want to point out two things about this quotation. First, it’s important for us to remember that this is from one of the 20th century’s most influential Christian ethicists—despite being a member of the American Eugenic Society. We don’t like to think that Christian leaders had views like this, but concern for the truth compels us to remember it. Second, Fletcher’s at least explicit that he thinks that disability literally makes someone no longer human. A person with Down syndrome is “not a person” but merely an instance of their disability.
Let’s also look at the language that we use about autism. If you start paying attention, you’ll often hear the language that a person ‘suffers’ from autism—language which suggests, even if implicitly, that autism is a bad thing. The largest US autism advocacy group, Autism Speaks, used to talk about their mission to help find a ‘cure’ for autism. They only removed it in 2016 after significant opposition from autistics. But I still don’t know a single autistic adult that supports Autism Speaks.
Autism is often described using the language of epidemic (but what makes it a disease?). It’s said that it should be eradicated. Given that there’s no ‘cure’ for autism, what’s that say about autistic individuals? Autism is often described as a threat, an enemy. There’s a ‘war on autism’ (and even a ‘Combatting Autism Act’ signed into law by Bush in 2006). In a war, the point is to crush the enemy. Again, what’s this rhetoric say about autistic individuals?
One of the country’s largest autism campaigns, run by the NYU Child Study Center included ransom notes from autism.
And Dr. Jerry Kartzinel—physician and NYT best-selling author of Healing and Preventing Autism—says that “autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members one by one.” Think of the stigma fostered by this rhetoric.
In 2009, Autism Speaks ran an “I am Autism” campaign. Like the ransom note campaign, it generated significant opposition from the autistic community. It compares autism to pediatric AIDS, cancer, and diabetes.
“I know where you live…. I will make sure your marriage fails…. I am autism. I will fight to take away your hope…. I will plot to rob you of your dreams….”
In addition to the tropes we’ve already discussed, the campaign only mentioned or showed autism in children—forgetting that autistic children grow up to be autistic adults. Many of our discussions infantilize those with disabilities, including autism, by focusing only on children. This is incredibly common.
Parents portrayed the face of autism to be that of a child 95% of the time on the homepages of regional and local support organizations. Nine of the top 12 autism charitable organizations restricted descriptions of autism to child-referential discourse. Characters depicted as autistic were children in 90% of fictional books and 68% of narrative films and television programs. The news industry featured autistic children four times as often as they featured autistic adults in contemporary news articles. (“Infantilizing Autism”)
What this does is lead to the cultural erasing of autistic adults.
And lest you think this was just one a one-time mistake, here’s part of their 2013 “Autism Speaks to Washington—A Call for Action” campaign (4 years after the “I am Autism” campaign) which was also very problematic.
But that’s the larger culture, you might be thinking. That’s not the Church. In the Church, we’re better.
Now, suppose for a second that that was true. If we care about transforming the problematic culture “out there”—about working to bring about God’s kingdom here, now—then the Church would be leading the way in terms of advocacy for autistics. We’d be fired up, calling out the ableism, opposing the rhetoric, demanding justice, critiquing the infantilizing. We’d be the light of the world, the city on a hill that cannot be hid. But we’re not.
If we’re honest for a few minutes, we’ll also see that we’re not that light of the world. The problems in the larger culture are also problems in the Church. Hear these words from Austin. Channing Brown’s wonderful recent book I’m Still Here. She’s talking about racism in the Church, but I think her point also applies here:
And even though the Church I love has been the oppressor as often as it has been the champion of the oppressed, I can’t let go of my belief in the Church—in a universal body of belonging, in a community that reaches toward love in a world so often filled with hate.(I’m Still Here, 21f)
All these things that we’d like to think aren’t in the Church, if we’re honest we’ll see that they are. Our churches are often part of the world filled with hate rather than the universal body of belonging Prof. Sullivan read about at the beginning. Christians were deeply involved in eugenics for much . of the 20th century. Christian parents sent their children to Willowbrook. Christians worked at and defended these institutions. Some of the parents who killed their autistic children are Christian. The Church makes autistic people feel unwelcome. Their voices aren’t heard. Their contributions aren’t wanted, much less sought after. Though he’s writing about higher education, Jay Timothy Dolmage’s words also illustrate how churches are often unwelcoming:
Institutions don’t just make it hard to get around in wheelchairs or on crutches–though this is absolutely part of how [churches] exclude. Instead, physical accessibility is always linked–not just metaphorically–to mental, intellectual, social, and other forms of inaccessibility.(Academic Ableism, 9)
According to one survey, adults with disabilities in the United States were almost 40% more likely to never attend church, synagogue, or other place of worship. More than half of parents of children with disabilities report that their children have been excluded at church because of their disability. The odds of a child with autism never attending a religious service are double what they are for the general population. And even higher for autistic adults. Story after story. If, as current statistics suggest, 1 out of every 59 individuals is autistic, think about your church—does 1 out of every 59 people there have autism? If not, why don’t they feel welcome? Why aren’t they valued? If you say that are but they just don’t feel that way, notice that you’ve just blamed them for their own exclusion.
It’s not enough for us to say that we don’t now the ways that our churches exclude. Ignorance here isn’t an excuse. And in fact, the retreat to good intentions coupled with ignorance is part of the problem. To quote Dolmage again:
I’m sorry, I didn’t . know I was being . ableist; I didn’t know that was ableism. This claim of not-knowing is also, in a way, a claim that the ableism isn’t really happening, isn’t the case. This claim of not-knowing is also a claim to being a good person: separating he action or the implication from the individual.(Academic Ableism, 35)
It’s a way of avoiding personal or corporate responsibility.
We’ve pushed people with autism “out there” rather than making it clear that they’re wanted—that they’re needed—in here. In the Church. With us. When we do have autistic ministries in our churches, they’re almost always for autistic children. Where is a place for autistic adults in the Body of Christ?
In many ways, we’ve made a Church without autism. But getting rid of autism means getting rid of autistics. We’ve tried to become God’s kingdom without autistics. But who is God’s kingdom for? For the poor. For the downtrodden. For the outcast. The autistic.
But God’s kingdom with autism isn’t complete. Isn’t whole. It isn’t the Kingdom to which we’re called. For the sake of God’s kingdom, we have to do better.