Reflection: Disability/Gift

Alyssa Graber

“Each person is given something to do that shows who God is: Everyone gets in on it, everyone benefits. All kinds of things are handed out by the Spirit, and to all kinds of people! The variety is wonderful!”

Before I begin, I want to make the disclaimer that I am speaking as someone who has worked with autistic and disabled folks and has spent a lot of time listening to their voices, and not as a representative of those communities. What I am sharing is not the experience of every disabled or autistic person, so I defer to them in all cases. Also language around disability is tricky. Most disabled folks prefer “identity first language” so that’s what I am using. I also use us/them language since I am not a part of the disabled or neurodiverse communities, but I recognize us/them is far too binary and is not reflective of the wide spectrum of disability and neurodiversity. We’re just stuck with the language we have! Speaking of neurodiversity- if you are unfamiliar with this term- it’s an umbrella term that encompasses autism, ADHD, and other brain differences. While it is not synonymous with autism, I am using both terms today.

I have been on a journey of how I think about disability, and I know there really isn’t a destination. I have been a music therapist for 11 years, and up until 2 weeks ago, have spent that entire time working in a school for kiddos with autism. While it’s tempting to get into the weeds of the history of autism and how it has historically been viewed and treated, and how that has changed over time, we don’t have the time for that. I will say that even in the last decade that I’ve been working in that community we have seen a lot of changes in opinions on ABA therapy, person-first language v identity first language, and the rise of the term “neurodiversity” and its implications.  I am very fortunate to have been a part of a team that was motivated to continue questioning and learning and changing our approach based on what we have learned. I myself have changed my practice significantly in the past decade based on what I’ve learned from the kiddos I’ve worked with and the autistic self-advocates I’ve listened to.

As a music therapist I have a unique opportunity to interact with my clients through music. What makes me different from a music educator is that I’m not there to teach music. What makes me different from a music performer or entertainer is that I’m not there to perform or entertain. My goal is to affect change in my clients using music as a modality. That change may have to do with helping my clients communicate more effectively either verbally or with a communication device or sign language, it may involve following routine directions or completing gross motor activities to help with strength or range of motion, or any other number of developmental, educational, or emotional goals. In my music therapy training, it was drilled into us that we need to be writing goals and objectives and documenting and making progress and reporting on the progress, etc. And that is important! We want to help our clients improve their quality of life by being able to function with as much independence as possible! But what I came to realize in my decade at the school was that sometimes I got so wrapped up in making progress and proving that my job is valid and is making a difference, that I was missing opportunities to connect with my kiddos through music in whatever way was the most meaningful for them.

When I began to listen to autistic self-advocates and other disabled folks I began to see other ways of existing in the world. I learned how hard it is to exist in a world that is not built for disabled folks. While awareness and advocacy and treatments have all improved exponentially, unfortunately access to life in public is still extremely difficult. Parents of the kiddos I worked with talked openly about how hard it was to bring their kids out in public. They were mocked at OSU football games. They were kicked out of bible school. It’s heartbreaking.

When we listen to disabled and autistic folks and what they want, the main theme is that they just want to be able to live their lives. Sometimes that involves a cure or better treatment for their disability, but in many cases all they really want is to be able to move about the world with as much independence as possible and for people to understand that they are whole, just as they are. They do not need pity or scorn or even your prayers for their healing. They want to be able to be in the world jumping around or stimming or making sounds that help them to keep their body regulated and able to focus, or that express their joy and excitement, or frustration or any of our human emotions.

When I started moving more towards a music-centered approach to music therapy (which may sound silly to those not in the field) I was more comfortable in allowing the kiddos I worked with to show up however they needed to show up that day. I became an observer. I got curious. I began to imagine what it might feel like to be in that kid’s body. I desperately wanted to be able to be inside their head. I started to notice things I hadn’t noticed before, like how ceiling tiles look like saltine crackers. How the lights reflect on the window in my office. How the piano sounds when you’re under it. How the world sounds when you have your head in a drum. There are so many ways to interact with our world that I hadn’t considered before. I think it can be a gift to experience the world in different ways. To be able to find joy and pleasure in feeling the vibrations of the piano or the guitar more intensely than others might. To feel so much excitement at getting to experience your favorite song that you can’t help but jump and flap your hands and run across the room.

BUT!

I want to be very careful to not stray into the “disability is a gift” or “God won’t give you anything you can’t handle” rhetoric. Disability is HARD. This world was not built for disabled folks. It is unfair and unjust. And the ways that the kiddos I work with were allowed to show their joy/pleasure/anger/sadness in the safety of my music room or their home or other supportive environments, often draws stares and judgment when they are outside of these safe, supportive zones.

I believe we need to open our hearts and our minds to learn as much as we can from disabled folks. We need to listen. We need to observe. We need to get curious. And then we need to fight to create a world in which everyone is accepted as they are. The goal should never be to make disabled or neurodiverse folks more like “the rest of us” but to help them reach their goals for independence and joy and community, while also working to make the world more accessible for everyone.

Reflection on 2 Samuel 9

Josh Davey

What do we make of this story? I have to confess, despite having grown up the son of a pastor, and going regularly to church weekly for most of my life, I don’t really remember this passage from 2 Samuel. And, I’ll be honest, there are a lot of things about this passage that make me uncomfortable.

One thing I noticed that bothers me is the ways in which the land is used as a transactional commodity, first divvied up among people after Saul and Jonathan are killed, then given back to Mephibosheth, and finally instructed to be farmed by Ziba and his. There’s a stark contrast between the restoring of Mephibosheth and the continued commodification and abuse of the land.

Perhaps what makes me uncomfortable is that Ziba, the “servant”, having been freed after Saul and Jonathan’s deaths, is put back into slavery by David for Mephibosheth’s benefit. In the middle of a story about Mephibosheth’s restoration, we are implicitly asked to accept re-enslavement as a necessary part of it. Additionally, it’s that the only named characters are men, despite there being many women who are also affected by the actions of David. An intersectional reading reveals that while named men with power are posturing and granting each other access, those without power, those unnamed and oppressed, are treated as pawns in the power game.

However, in preparing to lead a Sunday School class on accessibility, I’ve been reading a book by Dr. Amy Kenny, who is a disabled scholar and disability advocate, entitled “My Body is Not a Prayer Request: Disability Justice in the Church”. In it, she holds this particular passage up as one of restoration and healing. Dr. Kenny offers that the story of David and Mephibosheth is a glimpse into what reparation could look like in the kin-dom of God. Mephibosheth is not cured, but he is welcomed just as he is.  She writes “This is what God’s kingdom tastes like… It is a space of mutuality and interdependence. This table is accessible.”

David promises Mephibosheth he can eat at his table always. Always.

When I’m honest with myself, I think what makes me most uncomfortable with this story is that I’m just not comfortable talking about disability. Talking about ableism isn’t natural to me. I have a lot more practice thinking about and talking about racial justice, sexual and gender equality, and ecological and economic justice. But disability justice? Not so much.

I’m learning so much and learning how much I need to learn about the ways we talk about disability and the implicit and explicit ableism in our communities. But my first reaction reading this text was to look for ways I could avoid having to think about the disabled man that’s front and center.

I don’t like that this story forces me to think about the exclusion of a disabled person. I feel uncomfortable that if this story lays out a possible framework for disability reparation, what that may require from me. And I don’t like that my first instinct was to look at all those other ways of reading before confronting my own ableist bias.

There are many ways to read a text. Even a single person can understand a text like this in many different ways. I don’t want to dismiss the other things that I noticed when I first read this. These critiques feel important to me. But I was missing a crucial, necessary perspective.

In fact, I believe reading this story in many different ways, allowing many different perspectives to shine through, is important. I think this variety and diversity is beautiful. This diversity enriches each of us and reflects the goodness of creation.

This text, the Bible, is complicated and messy. Our human interactions can be messy as well. Even David and Mephibosheth themselves represent a complicated web of human relationship, full of both virtue and harm. And yet, as demonstrated in this complicated passage, the table has grown. It has become a bit more accessible. One more person is invited to eat. One more person is told they are not only welcome, but necessary, at the feast. One more person is able to fully join in, with all the messiness, pain and joy that this participation brings. One more person is promised they can eat at the table always. Always.