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 family life, sqt

{sqt} – finding community and playing board games

I’m linking up with¬†This Ain’t the Lyceum again today for seven quick takes! I’ve had a bit of writer’s block this week and having a format laid out for me helps get the words flowing again ūüôā

  1. I’ve been feeling a lot more isolated lately. Rondel (and even Limerick) are older than the kids who show up to the weekly church playgroup, all of their friends from church are in school or therapy most of the time, and I’m having trouble finding a homeschool group that is relaxed enough to accommodate our family’s needs. I mean, field trips and classes aren’t going to help the boys make friends, and park days where the kids are expected to play away from the adults is going to be hard with the little kids (and Rondel’s tendency to zone out and lose track of where he is and how to find his way back to me). And honestly, I don’t need a whole group, just one or two families who can walk through life with us right now.
  2. Sometimes I think our family falls into so many different/radical/tiny niche categories that I will never find anyone who really gets it on all levels. There’s the large “autism family” blanket – but oh wait, they don’t know how to handle an autistic parent, and they tend to support ABA therapies that are described as abusive by a lot of autistic adults who have experienced them (perks of an adult diagnosis here…). There’s the homeschool blanket – but we are using ESA funds from the state to help pay for speech therapy and curriculum, which puts us in a special legal category, and is apparently reason enough for several of the larger state groups to exclude us. And we’re Christian of course, but I’m uncomfortable in a lot of the Christian homeschooling circles (they can swing fundamentalist and Calvinist), and I want my kids to be exposed to the diversity of ideas and backgrounds that a secular group might offer – but I still want them to know (and hopefully believe) what I believe to be true about God. I could try to get all the pieces in different places but that is¬†so much socializing and I don’t think I can handle that many people/groups/acquaintances!
  3. Mostly I just want Rondel to find a best friend. He told me he would like to play more with other kids but he ends up just watching them and doing his own thing a lot of the time because he isn’t sure how to join in. And I don’t know how to help him ūüė¶ I just sort of clung to my best friend through most of childhood and depended on her to navigate social events. So I keep hoping he will meet someone to be that kind of friend… if you are ever wanting to pray for our family, that would be at the top of my list right now.
  4. In other news, we have been making more and more board games until they seem to be everywhere. We have number boards up to 100, 195, 223, and 550 (Limerick keeps requesting more and more numbers with smaller and smaller squares, but I think 550 is the limit even using our smallest game pieces). We have a traditional path-format board game with colored squares, a spiral snake with colored squares, a loop board game with the letters of the alphabet, and most recently a sting ray-shaped board with a colored path twisting along his body. My favorite game is called “LEGO Monsters” and we play it on path or spiral snake boards: each square gets one or two LEGO pieces of the same color as the square, and if a player’s piece lands on a square they get to collect the pieces and use them to build a monster. We all start with a head and eyes to make sure we aren’t missing those crucial elements, and we end up with some crazy creations! This game also has the advantage of removing the winning/losing element ūüôā
  5. While I may get tired of playing the board games all day long, I have to admit they were the cause of the least stressful visit we have ever had to the pediatrician. Usually the boys have a lot of trouble keeping their hands off of things, leaving the light on, staying quiet when the doctor is talking, and so on – but this time they each brought a board game and were able to play contentedly even though we had to wait quite a while (not due to any fault of the doctor; Aubade has a UTI and we had to wait for her to pee so they could test it). Even the doctor complimented them on how well they behaved, which is definitely a first at this office!
  6. Another side effect of the board games is that Limerick is beginning to internalize a lot of the numbers and their relationships. He can do quite a bit of addition now without having to count to make sure, especially with numbers 1-6 (thank you dice) but also with larger numbers because of his number boards. It’s neat to see his understanding of the numbers deepen – when I watch him think about the sum of his three dice, for instance, or about what number he’ll be moving to after adding his roll to his current position, I can almost see him manipulating the numbers in his head, breaking them up and recombining them, becoming friends with them.
  7. And finally, we have been counting. Counting and counting and counting. We drove to church and Rondel counted the whole time drive and all the way to Sunday School (he made it to 1025). We drove to speech therapy and Rondel almost cried when we asked him to take a break from counting for his appointment and pick up again afterwards (poor guy – it is hard to stop when you’re in the middle of something and going strong!). I’m not sure what he likes about it, since he isn’t nearly as in love with numbers as Limerick, but hey, he’s never going to forget those numbers now!

How has your week been? Do you have tips for making connections and building community? How about any favorite board games (non-competitive games in particular)?

Posted in musings

parenting towards inclusion

Inclusion begins with honesty.

If I gloss over the differences between people, my child will be confused by the discrepancy between what he sees and what he hears from me, and will intuit that difference is something shameful, something not to be spoken of.

Inclusion begins with knowledge.

Last week we watched a friend’s three children for a few hours at our home, one of whom is severely autistic. One of his favorite things to do is to take things apart (things like Duplo creations)… which was understandably frustrating for Rondel, who is very particular about his creations and gets worked up if anyone even gets too close to them. They were building together when the inevitable happened, and when I separated them Rondel told me that he didn’t like his friend “at all.”

But when I explained to him why his friend was behaving that way – that his brain was developing differently and he was in a lot of ways similar to Aubade as far as impulse control and the kinds of activities he enjoyed – it made sense to him, and he was able to adjust the way he played to accommodate those differences. Having that knowledge helped him to more fully include his friend.

Inclusion begins with presence.

One of the reasons I offered to watch my friend’s children (besides the fact that she needed someone urgently at the last minute) was that I want my children to spend time with people who aren’t like them: people of different ethnicities, people with physical disabilities, people with neurodivergences, people of different ages. It isn’t actually inclusive to sit around and talk about equality and opportunity and diversity if you aren’t living it out by filling your community with all types of people. I want my children to know from lived experience that even people who face incredible physical and mental challenges are just people, with their own needs and preferences and personalities, with their own unique strengths and weaknesses and quirks.

Inclusion begins with me.

Because my attitude and my choices determine the environment in which my children grow up, I have to shape it into one of acceptance and love. This is not necessarily easy for my introverted self, but I believe it is critically important for the future of our society and communities for inclusion to become part of the fabric of our everyday life and personal relationships. It begins here, in my home and in your home.

Posted in musings, quotes

brokenness

“We are all broken by something. We have all hurt someone and have been hurt. We all share the condition of brokenness even if our brokenness is not equivalent. […] Being broken is what makes us human. We all have our reasons. Sometimes we’re fractured by the choices we make; sometimes we’re shattered by things we would never have chosen. But our brokenness is also the source of our common humanity, the basis for our shared search for comfort, meaning, and healing. Our shared vulnerability and imperfection nurtures and sustains our capacity for compassion.

“We have a choice. We can embrace our humanness, which means embracing our broken natures and the compassion that remains our best hope for healing. Or we can deny our brokenness, forswear compassion, and, as a result, deny our own humanity. […]

“So many of us have become afraid and angry. We’ve become so fearful and vengeful that we’ve thrown away children, discarded the disabled, and sanctioned the imprisonment of the sick and the weak – not because they are a threat to public safety or beyond rehabilitation, but because we think it makes us seem tough, less broken. […] But simply punishing the broken – walking away from them or hiding them from sight – only ensures that they remain broken and we do, too. There is no wholeness outside of our reciprocal humanity.

РBryan Stevenson, Just Mercy, emphasis added

The last line from the quote above lingers in my mind, settling down slowly through my thoughts like gentle rain seeping deeper into the clay soil of our desert yard (and my thoughts are holding onto it like that clay retains the water that falls upon it).

I am reminded of C. S. Lewis’s attempt (in Mere Christianity)¬†at explaining how one man’s sin could affect the whole human race, and how one man’s righteousness could restore it, in which he compared humanity to a tree, each individual inextricably bound to the others through time and space, biologically and spiritually, so that sickness could spread from one to all the rest, and likewise healing.

I am reminded of the Apostle Paul’s letter to the Corinthians, where he writes that if he suffers, it is for the purpose of bringing them comfort and salvation, and that if he is comforted, that is also for their comfort and salvation. He was willing to be broken himself to help restore them to wholeness, and to share his healing with them. To be honest, I don’t think it would have been a satisfactory and complete healing for him if he knew that the church he loved was still broken and suffering, either through sin or persecution.

But I also know, from observation and experience, that vulnerability is hard, that grace is hard, that walking with another person on the path from brokenness to healing is incredibly hard. People don’t usually respond the way you might want or expect, and their journey toward wholeness tends to be circuitous and rocky. Rehabilitation isn’t a process of making over broken people into our image (or some ideal image), but rather a process of helping those people find freedom from the bonds of trauma, regret, addiction, illness, and so on. I don’t think it is possible without some amount of pain.

And as for how this might look, practically, in my life? I have no idea. There are many possibilities, obviously, since all of us are so broken, but I don’t know where to go after the basic beginnings of extending love and grace to my family and immediate community. I do know, at least, that I intend to keep my eyes and ears open to the stories and hurts of other people, so that when the opportunity to show love and mercy does arise I am prepared.

Posted in family life, musings

fear of change

After eight years of working in a genomics research center, I’ll be transitioning to being a stay-at-home parent a week from now. Technically I’ll be working eight hours a week, in a sort of consultant role, which will keep me connected to the science – but it will still be a big change. It’s what I’ve been wanting ever since Rondel was born almost four years ago – but as it approaches, I find myself becoming more and more anxious.

I like my job, and I am good at my job. My supervisor respects me and my opinions; the researchers who rely on the services our facility provides respect me and my scientific knowledge and experience. I know what types of problems are most likely to arise, and I have tools and strategies for troubleshooting them. And I know that if I put in time, effort, and energy, I will have a successful outcome.

To be totally honest, I really like having the respect of other professionals whose opinion I value and who do innovative and important research. It gives me self-confidence: I may be a complete wreck if I have to call my doctor to schedule an appointment, but when I sit down with a researcher to discuss their experiment and figure out the best plan for them to take moving forward, I am completely at ease. It also gives me a sense of identity and self-definition: when acquaintances ask what I do, I can tell them about the science and feel that I’m doing something of worth, something that uses my talents and gifts, something beyond just staying at home and cleaning and cooking like any other person could do.

At the heart of my nervousness about the transition, then, I think, is a fear of losing that respect and identity – of becoming part of the crowd, no one in particular, no one with any valuable skills or gifts to offer my community. When I spend time with other moms, I feel so inadequate in the areas they are gifted in: my home is rarely clean, laundry and meals happen on an as-needed basis rather than with planning, small talk eludes me, playdates terrify me, schedules and extra activities overwhelm me, my children are dirty and wild. My mind is usually lost in a book, or an idea, or a project, instead of focusing on the people around me. I say nothing and feel isolated, or I say too much and still never manage to connect with anyone else. I simply don’t have the skills that these other women have, and without them, I’m not sure where I can fit in or belong in the mom world (especially the homeschool mom world… those women are so organized that I give up just at the thought of trying to be like them).

In the workforce, in academia, where everyone is a bit weird and everyone is valued simply for the expertise they offer, I knew where I fit in and I knew how I could flourish.

In this new world, I’m afraid I won’t ever be able to flourish – and that in my lack of flourishing, I will stunt my children’s future as well.

I’m not going to let my fears make a decision for me, when I believe on principle that a self-directed education is ideal for children, and when I observe pragmatically the stress that a classroom environment would add to our family life. I’m going to choose to let my love for my family be the motivating factor here instead!

But I’m still afraid.

Posted in musings

biking through everyday life

I bike home in the evening, as the sun is getting low and the heat of the day has past, and the last half mile of my ride takes me down a residential street. This time of day, when work and school are done but the day still lingers to hold off the nightly routines, the neighborhood is filled with the soft sounds of people simply living.

A white girl in loose outdoorsy clothes stands close to a black man in the street, both of them touching each other and a bike (his bike, I think), looking into each other’s eyes as they talk.

Three boys around ten years old, two Hispanic and one white, wrestle on the front lawn, laughing and shrieking and trash-talking and acknowledging defeat, alternately.

A little Mexican girl of no more than two bounces up and down on a little wheeled horse contraption that moves forward every time she bounces, her mother patiently walking beside her.

An old man sits in his driveway on his scooter, accompanied by his faithful mannikin, perched upon a second scooter (I’ve seen them driving those scooters together, the old man towing his mannikin behind him, as it somewhat creepily nods and grins along).

A mother stands on her front porch and swings her arms forward into a startlingly loud clap, to the cooing and burbling delight of the baby sitting in its little chair in front of her.

I love this part of my¬†commute. This neighborhood may be poor materially, but it is rich in the simple joys of family and community life; I contrast it to the wealthy neighborhoods I know where the residents don’t even speak to each other except to complain and regulate each other’s activities through their HOAs, and I know which option I’d choose if it had to be one or the other. I crave that freedom to simply be, to savor with gratitude the warm night air and the sounds of people living together and letting each other live in their own way, and I am encouraged every time I bike through it.

Posted in musings, poems

side by side in the common good

What is the duty of the person who sees injustice, oppression, or need, and has some ability to protest or make amends?

Is it to step daintily around the problem, hoping that the filth and blood will leave your feet unstained?

Is it to click a few “Likes” on a Facebook page, or write a vaguely angry status, and then move on to happier thoughts without even a prayer?

Is it to give thanks for your own more comfortable situation, and avoid the suffering that your happiness may not be lessened by their pain?

Of course not.

It’s easy to see that, on paper; it’s harder to see it happening in your life, everyday, in the major decisions and the small choices: in your¬†quickened steps and averted gaze as you walk past the homeless man with the cardboard sign; in your fear of personal heartache that prevents you from fostering or adopting a child in need; in your unobtrusive isolation from the other in jobs, neighborhoods, and churches made up of people who look and think like you. Every little thing builds up, until one day you have completely blinded your mind and numbed your heart to the ache of the world around you, content in your own personal happinesses, and you don’t even realize the small and withered thing you have made of yourself and your life – your one precious and beautiful life, that could have been a source of good to better the whole world.

In the 1950s, a poet named Maurice Ogden wrote a poem called The Hangman about a village where everyone is murdered, one by one, by an ominous hangman of whom they all live in fear. Each time another is hung, the rest of the villagers sigh in relief and continue with their lives, until at last only the narrator of the poem is left – and he realizes that the hangman has now come for him as well:

“…’I answered straight and I told you true,
‘This scaffold was raised for none but you.

‘For who has served me more faithfully
‘Than you with your coward’s hope?’ said he,
‘And where are the others who might have stood,
‘Side by your side in the common good?’

‘Dead,’ I whispered; and amiably,
‘Murdered,’ the Hangman corrected me.
‘First the alien, then the Jew…
‘I did no more than¬†you let me do.'”

“Side by your side in the common good” – for we are not solitary and independent creatures, no matter how much our culture values individualism and autonomy. We need each other. We need to receive help from each other, and we need to give help to each other, both for the common good of our community and for the private good of our own soul. It is so easy to let our fear and our desire for comfort and convenience shutter us away from the needs and gifts of other people, especially people not quite like ourselves, but it leads to broken homes, neighborhoods of strangers, and the general fragmenting of society that is so painfully being put on display this election season.

I write this not as someone who is living this out well, and has the answers figured out. To be honest with you, I’m only just beginning to see how my own fear and selfishness have prevented me from following God boldly in the midst of a broken and hurting world. Will you come join with me, hand in hand, to learn again how to share our hurts, carry each other’s burdens, and sing each other’s songs of joy and of lament?