Posted in musings

toward love, toward justice

A woman from my church – the leader of our church’s ministry for neurodivergent and disabled children, and the mother of one of those children – asked me what my thoughts were on the recent protests, the black lives matter movement, and how it relates to the autism community. To be completely honest, I’ve been pondering exactly that for a while now. It takes a long time for observations to settle into my network of concepts and data, and longer still for me to verbalize those new connections.

There are of course obvious similarities between the black community and the autistic community, as there are between any minority groups simply by virtue of being different from the majority. I’ve been listening to Morgan Jerkins essay collection This Will Be My Undoing, and her childhood longing for whiteness – for the ability to confidently belong in circles of popularity and influence – mirrors the longing autistic people often have to be neurotypical. (If you see that the way you innately are makes you a target for oppression and shuts down opportunities for careers, friendships, and more, it makes it a lot harder to live authentically.) Building a society in which all people can belong, can be treated fairly, can move with equal confidence – this is good and necessary for the full flourishing of all minorities, no matter their race, ability, gender identity, or so on.

But the two situations are also very different, and it wouldn’t be right to look at the black lives matter movement and only see it in light of how I, as an autistic person, can relate to it. Our country has harbored violent discrimination against black people for hundreds of years, and the recent occurrences of police brutality (especially combined with the default reaction of many white people to defend and excuse the officers involved) show that it still exists despite the last 70 years of almost completely nonviolent civil rights action. I believe our most recent presidential election was also in part a white backlash to the previous eight years during which the Obamas held their power and influence with dignity, intelligence, and principled character. To a lot of people in majority groups, the thought of a minority group gaining power is threatening – and to prevent it happening they preemptively threaten minorities instead. And in our county, black people have borne most of that scorn, fear, oppression, and discrimination.

One last point I want to make is that oppression compounds. A black, trans, autistic woman is going to be at a massive disadvantage against the norms and institutions of our culture, even more than the average black woman. Just looking at the intersection of blackness and autism, for example, autism has historically been significantly under diagnosed in the black community (though it is getting better, according to the CDC) and the voices of autistic self-advocates are overwhelmingly white. When I think about how much having a diagnosis can benefit an autistic person, it makes me angry that just having darker skin can make it more difficult for an autistic person to get that diagnosis – not to mention the social supports following diagnosis that can help autistic people fully flourish and thrive.

The Bible shows us a vision of society that is radically different than what we have in America today, with our myriad lines of division and discrimination. When the Psalms praise God specifically as King, they do not say that He brings equality. Instead, they say He brings justice, righteousness, and equity (see Psalm 99). He doesn’t place us all on an even footing; rather He gives more grace where more is needed. He forgives more where sin is greater, comforts more where sorrow is greater, provides more where need is greater. As Mary sang in the Magnificat, “He has cast down the mighty from their thrones, and has lifted up the lowly. He has filled the hungry with good things, and the rich He has sent away empty.” As we work to build God’s kingdom, it is important for those with power and privilege to set it aside (or to be made to set it aside, when they have used it unjustly), to learn humility, that those who have been outcast or oppressed can also experience those good things. His kingdom, being for all nations and tribes and peoples, is conceptually inconsistent with racism, with in-group power hoarding.

The path from where we are as a country today to a nation patterned after God’s kingdom – a nation of justice and equity rather than injustice and oppression – is not going to be short or easy, and I definitely do not have the expertise to outline public policy. But I do know that change has to happen individually as well as systemically, and I can speak a bit about how to change and grow on that level. Just as I recommend reading books written by and about autistic people to begin to understand the autistic lived experience, so too I would recommend reading books written by and about black people to being to understand their lived experience (and of course I include talking to real people about their experiences as “reading”, especially if you are not a socially anxious introvert like me, since good conversations can be as edifying as good books). Read widely, and let your preconceptions be proven wrong – so your mind can be changed. Read deeply, so you can begin to empathize with those who belong to a different group and see the world from a different perspective – so your heart can be softened. Read prayerfully, letting the Spirit teach and convict you – so your soul can be moved to confession and intercession. For it is only when we have those three things that we can truly know and love the other – whether they are colored or abled or gendered differently than we are – and begin to work together on the institutional and systemic changes that must also take place.

Posted in information, sqt

{sqt} – internalized ableism

I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.

Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.

I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:

  1. …scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
  2. …laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
  3. …acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
  4. …believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
  5. …trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.
Limerick standing at the edge of a lake, arms raised mid-flap. I never want him to think he has to stop his excited flapping to fit in and make friends. I never want to cut out his natural and beautiful expression of happiness, and in so doing damage the happiness itself. So why do I try so hard to do that to myself?
  1. …doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
  2. …assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.

In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.

The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.

Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?

Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?

Posted in musings

internalized ableism

Sometimes the things we hate the most are things inside ourselves.

If you’ve read the Harry Potter series, you may remember the story of Dumbledore’s younger sister Ariana, who was unable to acknowledge or accept her own magical abilities after a traumatizing encounter at a young age. Because of her experience, she began to see her magic as something freaky, abnormal, disgusting, or fearsome – so she tried to conceal it, control it, eradicate it. But it was a part of who she was, and for all her attempts it would still come bursting out, wild and uncontrolled, in moments of high stress or emotion. And through trying to bury her magic, she was never able to reach the heights of power and beauty that she would otherwise have been capable of: her own self-hatred, shaped by the fear and disgust of others, held her back.

The movie Frozen tells a similar story. Elsa tries for years to lock in her power, controlling it only in the sense of never using it and never letting anyone know it exists – but she has to isolate herself to do so, locking herself away just as she tries to lock her power away, and when circumstances intensify, her power is revealed in erratic, wild, dangerous ways. And because of all those years of the people she loved and trusted most telling her not to use her power, to hide it, to control it, she is (at first, anyway) unable to see the beauty and potential of it. She is swamped by feelings of her own inadequacy and monstrosity, believing the lies of the disgusted and fearful crowds.

This is what internalized ableism looks like.

This is how it feels to believe that a part of you is broken or inadequate or shameful, that something about yourself should be hidden and controlled and never talked about, that something central to the core of your being is something normal people are right to be afraid of or disgusted by. This is what it looks like to shut down your abilities because they are different than other people’s abilities and they make you stand out in an uncomfortable way – to deny the fullness of who you are in a futile attempt to just blend in and meet the expectations of normalcy. It can lead to anxiety or depression: to a fear of rejection, perhaps, a fear of being revealed as some sort of unlovable freak or incompetent imposter. It can lead to resentment of or contempt for those who are open about their differences – maybe there is a bit of jealousy there: that someone else is able to live without shame into the fullness of the abilities God gave them, without the constant self-hatred and fear; or that someone else gets to inconvenience everyone with their needs while you have to suck it up and pretend your needs don’t exist because you don’t want to be the abnormal monstrous burden that your ableism tells you that you are.

It gets a bit emotionally convoluted, in case you couldn’t tell 🙂

And the worst part is that it is so hard to see it in yourself, and so hard to change it once you do. Shifting your paradigm about the world and your place in it feels like repeating a lie, over and and over again, in an attempt to make it true. Different is not less, over and over again. My needs do not detract from the value of my personhood, over and over again. Having areas of weakness does not mean I am incompetent and lazy, over and over again. Asking for help does not mean I am a failure, over and over again. My success, and my path to it, might not look normal, and that is ok – over and over again. Maybe if the new thoughts get repeated enough they can beat down the ascendancy of the old negative ones.

Ariana never had the chance; she died before she was able to heal, if she ever would have been able to anyway. But Elsa – by the end of her story she is beginning to learn, beginning to accept herself with her differences, not despite them. She is beginning to see the extra beauty the world can hold because of the differences of the people in it, no matter how abnormal or debilitating their abilities may seem at first. She is beginning to focus on what she can do instead of trying – and failing – to act just like everyone else, and in so doing is able to fill a unique place in her community instead of staying isolated and hurting.

We all have something to give, and we all have strengths and abilities we can develop, and we hurt ourselves most of all when we believe the lies that say our differences make us less or that we should be ashamed of our weaknesses and needs. Society has enough contempt for the disabled and the neurodivergent; why should we add to it with our own self-hatred?

 

Posted in family life, musings

parental ableism

It is hard to be a child. It is hard to be a parent.

It is harder still to be a child with a disability – to be noticeably different from the world while still having to find a way to live in it, to be growing and developing on a different timeline and watching younger friends and siblings attaining higher skills, to be unable to participate in “normal” activities and events. And it can be harder to be the parent of a different child as well: there is the pain of seeing your child left behind, isolated, excluded; there is the sorrow of knowing certain paths are closed for them; there is the hurt of watching them hurt, physically or mentally, because of their condition.

Anyone who denies that parenthood can be difficult is delusional, but in the autism world there is a subset of parents who twist their children’s difference into a curse, who portray themselves as martyrs and who thus by implication make themselves out to be the victims of their children’s autism (and, since autism is an integral part of a person, victims of their children). I haven’t had much contact with these parents, and I am not sure how large of a group they are though I have read about them often on neurodiversity advocacy websites, so I didn’t have the inoculation of experience to protect me when I opened up Pinterest and saw this image at the top of my home page:

badparent
White words on a gray background: “I have a child with Autism. Everybody sees his struggles, but nobody sees mine. It’s hard to be screamed, yell at, every single day. It’s exhausting listening to him cry every single day.”

This parent is clearly feeling resentful of their child. They see their son struggling, and instead of responding with compassion they just resent the burden that those struggles impose upon them as the parent. (So while they “see” their son’s struggles it doesn’t seem like they are knowing and understanding their son in his struggles.)

Well guess what?

Your son didn’t ask to have a parent who doesn’t want to hear his tears with love, or to help make his environment safer and more accepting so that he’s not continually triggered to tears and screams, or to view him with compassion and understanding.

Your son didn’t ask to be born autistic in a world that values normalcy and conformity, especially in children, who are expected to walk in obedient lockstep through the typical developmental stages and the standard grades of school.

And I can guarantee you that your son doesn’t want to scream and yell at you all day long. Every child – yes, even autistic children – want to have a relationship of peace and love with the people that they are most closely tied to. His behavior is how he is communicating to you that something in his life is horribly, terribly, wrong. He could be non-verbal and in physical pain he doesn’t know how to communicate or address (like my friend’s son often is). He could be overwhelmed by an uncomfortable sound or smell or feeling, and be unable to handle that sensory input on its own or in conjunction with some other social trigger (like my son often is). He could be in ABA training for hours each day and have no other way to tell you that it is sucking the life out of him to be forced into a neurotypical box where he knows he will always fail and always be judged.

Maybe you, as the adult in this relationship, need to address the anger issues you have with your son’s autism before blaming him for the way you are reacting to his attempts to communicate with you. I understand that things can be hard, but it is never appropriate to shame your child for his struggles on the most public forum possible (the Internet), and it is incredibly immature to add to that by insinuating that your struggles are all due to his inability to be a normal child, that you are some sort of martyr for putting up with him. Get the support you need, and check your attitude, in a private community where your child’s dignity can be protected and respected.

goodparent
White words on an orange background: “AUTISM. When I have a hard day I know he’s had it harder.”

I love this second image so much because it acknowledges that both parents and children will struggle without victimizing either of them, without an attitude of resentment towards either of them, and with respect and tenderness towards both of them. (And it puts it so gently too!)

Like I said above, the hard and difficult behavior of a child, especially a child on the spectrum, and even more especially a non-verbal child, is a method of communication. Their needs and wants and struggles will show up in the way they act, and while their behaviors may be particularly challenging for a parent to deal with, they are a symptom of something deeper that is wrong.

And if you are that parent, faced with those challenging behaviors, feeling at the end of your rope, unsupported in your own struggles, please find help, and please do not blame your child or their autism for your struggles. Honestly, blaming anything only leads to more resentment. Try to see those behaviors as a clue to finding the best way to support and help your child. Try to see your child as fully human and fully deserving of respect and dignity despite their struggles and the struggles you have as their parent. And try to remember that no matter how hard your day is – as a neurotypical adult in a world set up for the way you operate – that your child’s day – as a neurodivergent child in a world foreign and alien to the way they operate – was almost certainly harder.