When Churches Discuss Disability Without Disabled People

Yesterday, a pastor friend sent me the link to a podcast from the Canadian Council of Churches (The fourth episode is the relevant one if you care to listen). The most recent episode deals with disability inclusion in Christian churches. They wanted my perspective on the treatment of disability. While I already shared some scaled down thoughts with them directly, I really feel it’s important to look at this more in depth in a public forum because religion plays such a huge part in the lives of billions of people and arguably particularly for disabled people, we are affected whether we want to be or not.

As I told my friend, ideologically most of the ideas are generic. A few might actually be considered progressive. What the ideas espoused in the podcast fail to do is challenge or look for meaningful solutions. There’s a lot of talk about moving beyond inclusion to making disabled people feel like they belong. Which is great but seeing as inclusion is still an issue for many and the men interviewed failed to deal with reasons for why exclusion and alienation happen, it’s all rather hollow.

The two men interviewed were a Catholic and a Coptic Priest. The interdenominational discussion is nice. It’s also nice that the issue of disability inclusion is treated as a Christian issue and not an issue for certain denominations.

The first real issue is that both of the men are nondisabled and that there seems to have been little effort to really include the voices of actual disabled people. This leaves an overly optimistic picture as all of the anecdotes about inclusive initiatives come from nondisabled people. It comes across as extremely rose tinted.

Both men mention that they have heard from disabled people that they feel excluded or alienated but the underlying reasons for this is never looked at.

This is one of the biggest problems with the interview. It talks a big game about inclusion and belonging but actively avoids a meaningful discussion about why disabled people are excluded.

The problems of religious inclusion for disabled people go beyond initiatives to hire more disabled people or make sure they are on boards. Though those are good and necessary steps.

In order for physical inclusion to move toward social inclusion and true belonging, churches need to actively acknowledge, churches discriminatory pasts and presents.

Dr. Thomas Hentrich, the Roman Catholic interviewee illustrates this when he shares a story about his disabled son being refused his first communion on the grounds that the church was concerned the boy couldn’t understand its significance.

Hentrich actively refused to acknowledge this exclusion as discriminatory. Framing it instead as just unfortunate and hurtful. I’m not sure what definition of discrimination he’s working from or if he thinks that a theological justification for the action shields it from being discriminatory. Either way, I have to disagree.

Theological justifications for treating disabled congregants need to at the very least be fully laid out and studied and then preferably actively challenged.

Hentrich’s solution of having his son receive communion at a Coptic church instead is also problematic as an example of a reasonable response for several reasons.

1.) By offering this as a simple solution it ignores the harm of the initial exclusion

2.) It ignores that many people see denominations as separate religions, so many people would not be comfortable simply leaving not just a particular church but a denomination.

  • This then could lead those individuals to feel unwelcome and possibly disconnected from God.

3.) Disabled people who want to be part of a faith community should not have to shop around for one that is going to treat them well.

The only other problematic belief that was actually mentioned and again not dealt with is the idea that many Christians hold that disability is a punishment either on the parents or the disabled person themself.

The idea was underplayed and again there was no discussion of the impact this still reasonably widespread idea has not only on disabled Christians but also on nonChristian disabled people who come into contact with people who hold those beliefs.

Instead of actually dealing with it, the podcast brushes it off with one interviewee basically writing off people who believe it as not understanding scripture, suggesting that Christ actually said the opposite and was progressive in his views on disability.

I assume they were talking about this story from John Chapter 9

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world.”

After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. “Go,” he told him, “wash in the Pool of Siloam” (this word means “Sent”). So the man went and washed, and came home seeing.

While it is true that it actively counters concepts of disability & sin, it’s not hugely progressive and leads to two other issues that disabled people face in Christian churches. The idea of disability as symbol (often interpreted as object of charity) and faith healing.

So verse 3 Jesus says “but this happened so that the works of God might be displayed in him“. This can be used to mean the miracles performed by Jesus himself but can also be taken to mean that disabled people are to acted upon charitably (which separates them out from others as unequal) or simply as symbols to other people of what could be and that others should be grateful.

Allow me to share a quote about Tiny Tim (Yes, the Dicken’s character) on his disability and his place in the church “He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.””*

For a less historical & literary example about how disabled people theologize their disability as symbolic for others see the ministry of Joni Eareckson Tada.

Now remember that Jesus may have denied that disability was caused by sin but he didn’t follow that up with “go forth and create an accessible society that includes and welcomes disabled people”. The above story is just one of many where he heals disability. This is followed by the Apostles healing people and a long history of healing by saints. Disability is very much framed as bad and that people are better off without it.

Which brings us to historical and contemporary beliefs in faith healing.

I don’t actually know a single disabled person personally, who hasn’t had someone pray that they be healed. These encounters don’t always happen in the church. The first time it happened to me, I was walking home from school.

These encounters often also include judgemental statements about people’s levels of faith along the lines of “if you believed enough you wouldn’t be disabled. God would have healed you”.

For the faithful this is a judgement on both their faith and their value. When it happens to nonChristians it just breeds animosity towards Christianity.

Saying that the bible doesn’t support the idea that disability is sinful but then saying that it is progressive shows the same selective reading that people who do link it to sin or at least a person’s level of faith. It also just ignores the reality of people who do think that way and the impact they have on disabled people not only in their churches but in society at large. For an account from an actual disabled person on this read Carly Findlay Morrow on her experiences.

Creating inclusive churches is going to take more than just inclusion initiatives. While it is nice to hear about things like the tradition in Coptic churches of hiring blind cantors and a general desire to get more disabled people involved in the church. This work cannot be done effectively or in a meaningful way if those churches are unwilling to accept and acknowledge that on both church & cultural levels they have created an alienating environment for disabled people.

In recent years there has been some work done on creating a theology of disability but unfortunately like this podcast it is far to often the work of nondisabled theologians.**

Churches need to be willing to be held accountable for their histories of harmful theologies and practices. They also need to be accountable for how these things are still happening.

They also need to be willing to acknowledge and accept that other churches may have even more harmful practices. People affected by these harmful ideas are not going to be comforted by flippant dismissals of biblical understanding. Those ideas need to be actively challenged even if you don’t share them. The fact that they exist and cause real harm needs to be actively dealt with, not glossed over.

Also in terms of physical inclusion, churches need to practice what they preach and try not to have podcasts about disability inclusion that don’t actually include disabled people.

There also needs to be more discussion of not only including disabled people at the church level but encouraging them to enter the ministry. Without disabled people at all levels of the church, true inclusion and belonging of disabled church members cannot happen.

Failure to include actual disabled voices and deal with the ideological issues of the church and disability, the belonging advocated for in that podcast cannot truly occur.

 

 

 

*Dickens, Charles. A Christmas Carol (Wisehouse Classics – with original illustrations) (p. 37). Wisehouse. Kindle Edition. find it here.

**an example of this is Thomas E Reynolds’ Vulnerable Communion

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Mayim Bialik’s Take on Sheldon Cooper and Autism is Wrong

The sitcom The Big Bang Theory (TBBT) has been on tv for eight years and has been renewed for at least two more seasons. In that time there has been a lt of speculation about whether the character Sheldon Cooper has either Obsessive Compulsive Disorder (OCD) or an Autism Spectrum Disorder (ASD) or both. He is never directly diagnosed or labeled on the show but his behaviour is easily recognizable as autistic.

As a result autistic viewers have been looking for verification from people associated with the show and we finally got it, sort of.

Actress Mayim Bialik (who plays Amy Farrah-Fowler on TBBT) was being interviewed by Neil DeGrasse Tyson when he asked her about the speculation. She gave a response that Radio Times lauded as “Brilliant”. She said,

“All of our characters are in theory on the neuropsychiatric spectrum, I would say, Sheldon often gets talked about in terms of Asperger’s or OCD. He has a thing with germs, he has a thing with numbers, he’s got a lot of that precision that we see in OCD. There’s a lot of interesting features to all of our characters that make them technically unconventional socially…

I think what’s interesting and kind of sweet and what should not be lost on people is we don’t pathologise our characters. We don’t talk about medicating them or even really changing them.

And I think that’s what’s interesting for those of us who are unconventional people or who know and love people who are on any sort of spectrum, we often find ways to work around that. It doesn’t always need to be solved and medicated and labelled.

And what we’re trying to show with our show is that this is a group of people who likely were teased, mocked, told that they will never be appreciated or loved, and we have a group of people who have successful careers, active social lives (that involve things like Dungeons and Dragons and video games), but they also have relationships, and that’s a fulfilling and satisfying life.”

Essentially TBBT is a utopian example of what happens when people are accepted for who they are and the lack of diagnosis is a radical move towards inclusion and building acceptance of people’s differences.

It’s a nice idea but it’s a false one both in how the show is structured and made and in how people who have autism and other behaviour disorders are treated.

It is true that diagnosis has been withheld on the show by design. The intention however was not to make a statement about the pathologization of people with behaviour disorders. We know that the creators of TBBT never intended for Sheldon to be seen as autistic because when asked, they deny that he does. Bill Prady one of the co-creators of the show has acknowledged the similarities but categorically denied that Sheldon was autistic. His reasons for denial are troubling. The avoided officially giving Sheldon an ASD diagnosis because it would put much pressure to get the details right. The other creator Chuck Lorre also denies Sheldon is on the spectrum.

So this idea that TBBT is a way for the awkward and possibly autistic audience to see that the world can fit them and that TBBT is just a big “It get’s better” message to those of us who were bullied for having characteristics similar to Sheldon are just false. Bialik’s excuse is just a way to push back against the criticism that TBBT gets for turning ASD into a caricature. She made a nice progressive sounding statement that just doesn’t happen to be true. There is no underlying moral of the acceptance of difference regardless of label in The Big Bang Theory.

There isn’t even really a veneer of it as most of the comedy around Sheldon is just how socially inept and different he is. The comedy comes all to often at his expense.

The show may not label Sheldon with OCD or autism but his behaviour is still pathologized. His friends constantly question and bring attention to his atypical behaviour. He is  even aware that people find him odd. He has on more than one occasion proclaimed “I’m not crazy, my mother had me tested”. The thing you should take away from this is not that he was seen by a doctor who failed to diagnose him and accept that at face value–My parents had me tested for ADD as a child, as I don’t have ADD I was not diagnosed, no alternate explanations were sought and yet I was and still am autistic. Heck, when my parents noticed that as an infant I avoided using my left hand, the doctor just said I was really right handed (seriously), I actually have cerebral palsy and failure to diagnose or misdiagnose is common–What you should focus on here though is that Sheldon feels the need to defend his behaviour because others are questioning it from a psychological way. So yes the show really does pathologize Sheldon, it just doesn’t give him the explanation or defense of a label. In so doing tacitly making the judgement and the laughter at his expense acceptable because if he were acknowledged as autistic, this treatment would be considered cruel.

As Jacqueline Koyanagi brilliantly puts it in an article on Disability in Kidlit (go read the article, seriously excerpts don’t do it justice)

Here is a character who is obviously coded as autistic, so much so that his behaviors often tip over into autistic caricature…. So, yes. Caricature it is, stripped of context. In this case, it’s all in the name of comedy, but it can and does happen in the name of entertainment of any stripe. Sidelining the issue does not erase it.

She goes on to say and I completely agree,

Fictional characters exist to be consumed by real people, and real people live on the autism spectrum. Characterization, regardless of label or lack thereof, regardless of genre, has a real impact on these real people, myself included. Content creators must understand that they can be answerable for that impact. When they render a character into their world wearing an entire suit of autistic behaviors, reactions, and needs, responsibility-dodging only serves to hurt the population they’re representing, whether they wanted their work to be representative of that population or not.

Koyanagi and I have something in common, we we both diagnosed on the autism spectrum as adults and as she points out,

The difference between “generic eccentricity” and a formal diagnosis is just that–formal diagnosis. It seems absurd that it bears stating, but a person on the autism spectrum is on the spectrum even before they are diagnosed. Similarly, bullying is bullying regardless of when diagnosis/identification occurs–and, yes, even if it never occurs…

Aspects of a person’s being can’t be swept under the rug by denying labels with a shrug and a saccharine smile. Eschewing labels does not equate dodging responsibility, and mistreatment done in ignorance is still mistreatment. That goes for the actions of fictional characters and writers’ intentions alike. When autistically coded characters are dismissed as eccentric and worthy of disdain, it reinforces the idea that we are just being difficult. When the people around autistically coded characters are portrayed as Atlas-like martyrs for enduring such a burden, that is doing real harm to real autistic people. Media matters. Media influences, shapes, and deepens perspectives on real issues.

When Mayim Bialik says that they refuse to pathologize the characters on the show. She is essentially saying “we don’t see disability, we just see people” a sentiment that erases experience. Perhaps not for the fictional Sheldon but for people in the real world. People with autism are already people and they are often people with needs that differ from those of the neurotypical majority. Not labeling someone is just reinforcing the idea that disability is bad or shameful, even if it is couched in terms of universal acceptance. Because at the end of the day difference is treated differently (often in terms of discrimination and oppression) and it is those of us with labels who are more able to advocate for accommodation and change. People who are simply different are far easier to dismiss and ignore.

I am with Dumbledore on this issue “Always use the proper name for things. Fear of a name increases fear of the thing itself

Ignoring the autistic coding of Sheldon Cooper is harmful and unfortunately avoiding the label allows Lorre and Prady to create a caricature of autism with plausible deniability built right in.

So don’t be impressed with Bialik’s seemingly progressive interpretation because it is a lie painted over an issue that is finally being recognized to excuse past bad behaviour.

Radio Times gives Bialik a credibility bump by pointing out that she has a PhD in Neuroscience but she is not the person who has to live with the consequences of a world that internalizes her ideas. Autistic people do.

There is a reason one of the most enduring slogans of the disability rights movement is Nothing About Us Without Us. We deserve proper representation and not to be brushed aside when someone with credentials but no shared experience minimizes our concerns.

There is no TBBT utopia and things will not get better for the people who see themselves in Sheldon Cooper if the game plan is to pretend that neurological disorders don’t exist or more importantly that people will treat those exhibiting symptoms of ASD or OCD well without activism and advocacy. Ignoring social discrimination doesn’t make it go away, it helps it grow and gives it legitimacy.

Footnote/ updated

I would like to mention that Bialik does have one good point, the idea that people who are on as she puts it the neuropsychiatric spectrum don’t need to be changed or cured to have fulfilling lives is entirely correct. I also though don’t see that reflected in the show as the people around Sheldon are constantly complaining about how dealing with him frustrates them.