Posted in musings

on abortion and disability

I’ve noticed lately an uptick in the discussion on abortion among my online friends and on the radio; I’m pretty sure it is due to some recent state laws (or proposed laws) related to the topic, but I have been avoiding political topics like the plague recently for various reasons so I don’t know the details. So I am not planning, here, to go into legal details. I don’t know what is best from a pragmatic perspective, balancing the needs and rights of every person in a far-from-ideal world full of broken and sinful people and circumstances.

But a lot of the arguments I have seen remind me of the atrocities commemorated every March 1st on the Disability Day of Mourning. There are parents who believe that their children’s lives will be not worth living because of their disability, who think it would be better if they didn’t live at all then live with that suffering, and quite logically decide to kill them. There are reporters and juries and judges who believe that the burden of care and support placed upon these parents by their disabled victims somehow makes their crime less heinous and more deserving of leniency and compassion. None of these parents wanted a disabled child, after all. Their entire lives were overturned and their expectations and plans were dashed because of these children’s existence. And since the victims weren’t going to have great quality of life anyway, due to their disability, surely we can all identify with their parents and the hard decision they made stemming from their grief and anger and stress (again, all the fault of the victim). On the Disability Day of Mourning, the disabled community remembers these victims, speaking their names, attributing to their memory the individual worth and human value that they were denied in life.

And when I read what my friends have to say in defense of abortion – focusing on the pain and grief of the mother, on the brokenness of the situations that most commonly lead to abortion, on the emotional and physical caregiving demands placed by the fetus on an unwilling parent, on the potential for child abuse and poor quality of life for the unaborted child – it makes me think that if we (as a society) can say these things about the killing of the unborn, it won’t be long before we can say them about the disabled. Because yes, all those points are true and valid and need to be addressed, but they do not invalidate the humanity of the vulnerable and needy and young – of the child who did not ask to be conceived, or to be born with a disability, but who as a result of the brokenness of the world finds herself in need of care and support with no open and loving arms extended to her.

How do we love and support those who unexpectedly find themselves parenting a special needs child with no clue of how to handle things – or who find out they are pregnant and know they have no resources to raise a child? How do we protect children whose parents sink into abusive or neglectful behaviors because they are overwhelmed by the support and care necessitated by their child’s disability or believe their disabled child to be less valuable or deserving of love – or because they never wanted a child and are suddenly pregnant and have no love to give to the child of a rapist or abuser? Whatever the best answer is, I’m fairly sure it doesn’t involve killing those children, anymore than it would involve killing the adults who find themselves in parental positions they are inadequate to cope with. We need to reach out with hands gentled by our own knowledge of the brokenness of the world and of each human heart, and smooth the troubled path before the feet of these parents and their children: sometimes to guide, sometimes to lend a helping hand over obstacles in the way, sometimes to carry, and sometimes to chart a splitting of ways. And at the same time, we need to make sure that the amount of support a person needs – the extent of their dependence on caregivers – does not impact the value we ascribe to their life.

Otherwise, we end up attempting to erase a problem by erasing a person.

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 musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

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:

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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.

Posted in family life

park remodels and random thoughts about playgrounds

Our hometown recently updated one of the city parks in a more disability-friendly way (if you’re local, check out this article for more details!), and since it had been one of our favorite cool-weather parks last year we were excited to see how it had been transformed over the few months it was out of commission. Of course the ducks and the library were still there, so it’s hard to go very far wrong…

While none of my kids have physical disabilities right now, several of my friends have siblings or children who do, so accessibility is something I try to be aware of (although I obviously don’t have the personal experience to really evaluate whether or not something is truly accessible). It’s also something I want to encourage and seek out, so that my kids don’t grow up feeling uncomfortable and awkward around people who are physically different than them. If they grow up playing at the park with people with disabilities, it’s just going to be another permutation of normal in their minds, which is exactly how I think it should be.

(One of my favorite moments with Rondel at a park was about six months ago, at the big splash pad near our home, on a Friday morning when a group from a facility for severely disabled individuals came to enjoy the water as well. One older teenager was just sitting in the water, under the spray, splashing with his arms and laughing and laughing, a look of pure happiness on his face. Rondel watched him for a few minutes, then sat down in the water a few feet away and started doing the exact same thing. To him, there was nothing strange about seeing a “big person” acting like that – it was just another way to enjoy the park, and one he could enter into and enjoy also.)

Anyway, the new playground has a few attractions specifically geared toward children with physical issues – a zip-line that has a seat and harness instead of just a pole to hang onto, ramp accessibility on the play structure, a two-person swing, and rubber matting over a large part of the playground so wheels don’t get stuck – but it also has a lot of generally fun things for any kid to engage with: slides, ropes, ladders, a sand table/digging area, and so on. We’ve been there twice in the past couple weeks and had a great time on both occasions.

Rondel particularly appreciates the seated zip-line – he hasn’t mastered holding on to the more traditional seat, but he loves zooming back and forth:

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Seriously, the kid just can’t contain his laughter every time he soars backwards on that seat!

Limerick was a bit more apprehensive of the zip line (he liked it, but at a slower pace), but he loved the sand and the ladders:

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There is only one small sand area at the park (so it can easily be avoided if you don’t like the mess or if your child has sensory issues with the sand), and it only has one digging shovel – both times we went, we brought our buckets and shovels, and they were much appreciated by the other kids at the park. The other non-rubber areas have wood chips.

They also have a neat piece of equipment I hadn’t seen before: basically a series of rolling plastic tubes underneath a sort of tunnel of railings. The little kids were scooting and crawling over the rollers underneath the railings, and some of the bigger kids were holding onto the railings and “running” on the rollers with a sort of treadmill effect. Limerick went though that one over and over again:

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I like the random playground equipment that, unlike ladders and slides, doesn’t have an obvious “right way” to be used; I think it facilitates open-ended play and experimentation, and it cuts down on all the parental rules for play that I notice every time I go to the park (at least at parks with attentive, hovering/engaged, middle-class white parents… the parks by our home, in much poorer neighborhoods, are far less parentally supervised).

Anyway, I think the changes at this park were for the better, and we’ll be coming back to play, feed the ducks, and maybe even do story time at the library! If any of you are local, it’d be a great place to meet up and spend a morning getting to know each other.