Subversive Somatics: Massage with Clients with Developmental Disabilities

This is a post I originally wrote for my massage school's (PMTI) alumni blog.

Dear Community,

Since graduating from PMTI, a large part of my massage work has been with developmentally disabled clients. Even before enrolling at PMTI, I knew that I wanted to use the skills I learned to work with folks of varying identities whose bodies aren't typically affirmed--in fact, are judged, condemned, and violated--in dominant society. To do this work at the intersection of healing and justice has been my aim all along with my private practice.

Outside of my private practice, I also work part-time for a more specialized small business that has allowed me to focus very specifically on adaptive massage with folks in group homes with widely varying developmental disabilities. Knowing how uniquely vulnerable folks with intellectual disabilities living in group homes can be to the strong hand of ableism--both systemic and individual--I was motivated to partake. I humbly approach the work as a path to try to subvert these oppressive ableist forces in whatever small way I can.

This massage work builds on my background of studying & engaging with Disability Studies & Disability Justice, my own experience as someone with psychiatric disabilities, as well as almost 10 years of work as a personal care attendant and caregiver in various settings (in and outside of group homes) with those across the disability spectrum.

Most of the clients I work with at this other practice are multiply disabled, and have physical as well as intellectual disabilities. Some also have psychiatric disabilities. My clients' levels of intellectual disability span a large range. Many don't speak or sign. Our communication is non-linguistic--but still quite effective and precise. Working with a wide range of developmentally disabled clients has affirmed for me the power and effectiveness of kind, skillful touch as a means of connection.

Furthermore, I've had the chance to explore my own assumptions about what massage "should" and "shouldn't" look like. With mindfulness of my own somatic experience as my guide, I continue to learn how to be a more creative therapist and a deeper listener of clients and their bodies.

I've been humbled by my clients' generous opening to me and my touch. I write this post to share some of my experiences around a few key themes that have exposed themselves as being valuable in my work with developmentally disabled clients. Thanks for letting me share!

being mindful of ableism--systemic and interpersonal--is key

Perhaps what I've loved most about my experience is that I've not once been tempted to de-politicize the work. Working with clients who face ableism day in and day out--for most, compounded with other intersectional oppression--I am motivated to honor them to the best of my ability. I know this means staying vigilant and continuing to deepen my understanding of the politics of disability, access, bodies, touch, and healing/therapeutic work, in addition to deepening my professional massage skills. I aspire to conduct sessions that integrate an ever-deepening, holistic, meaningful, and intersectional understanding of Disability Justice--this is, in fact, the only way I can offer truly safe, healing spaces to my clients.

With regard to systemic ableism, since I'm working with clients who live in group homes, coming in with a background knowledge of how group homes work--well, often, don't work--has been vital to my practice of massage. It's been unbelievably helpful to be familiar with the world I'm walking into. I know that there is rampant neglect & abuse in group homes in this country. Neglect of group home residents is commonplace from governing bodies at all levels--from the lack of funds at federal and state levels, including layers of dysfunction in Medicaid, to the organizational politics at the group homes themselves, including ineffective boards & administrative decision-makers, down to the very management and mistreatment of the direct caregivers themselves.

There's a host of systems at play even when we look at the specific intersection of disability and massage. Has anyone else felt frustrated, for example, by the fact that the anatomical drawings in our massage books seem to always show able-bodied models? (Also, male, cis, thin, and white... why anatomical drawings need to have blue eyes is beyond me... but I digress...)

With awareness of systems of ableism in the back of my mind as I walk into the homes, I enter with an intentionally surfaced sense of humility. My effect will be small, but, hopefully, subversive. The clients I work with are survivors, and strong.

To do work that's not unintentionally harmful means not only interrogating the systems at play, but also my own oppressive tendencies. Practicing being mindful of my own internal somatic cues has been especially helpful. Of course in my intellect, I know it's silly to think there's a mere one or two or two thousand "good" ways to be in this world. "Good" and "bad," "better" and "worse"--these kind of judgments just don't apply when it comes to human beings and our bodies and ways of being! And yet, my body shows me signs of my own conditioned limitations in living into this belief wholeheartedly.

For example, recently I had to ask myself: Why do I feel a tenseness arise in my belly in response to one of B's particular stims? Why do I feel good when the massage helps her "relax into" not doing this kind of stimming so much? Is that really what's going on? Of course, I use feedback from her body language--including stimming or lack thereof--as a vital form of communication about her comfort and nervous system, especially since she doesn't communicate linguistically. Yet, I realized recently that I must intervene in my own presumptuous tendency to feel with B that a decrease in stimming is necessarily a "good" sign of relaxation. As I develop my capacity for self-awareness of my own discomfort, I can more easefully re-center B in our sessions, and not be sucked into, and then controlled so much by, my own reactionary responses.

While it's painful to witness my own internalized ableism, I try to keep returning to self-awareness as a path towards curbing my biases about "normalcy." I most definitely need compassionate self-awareness to work to eradicate within myself any kind of judgment on the nature of clients' (and everyone's--including my own) bodies, minds, and ways of being. It's not personal, after all, that I've inherited a host of ableist tendencies from growing up in this society--but now, as an adult, it is my responsibility to interrogate my involvement. Being a massage therapist with developmentally disabled clients is yet another opportunity life has given me to move towards the freedom that comes with unlearning oppressive structures of thinking and feeling.

consent, affirmation & empowerment, and the politics of pleasure

Anyone familiar with the reality of group homes knows that consent around touch is often not practiced in everyday touch with folks with developmental disabilities, especially those with more severe disabilities, and/or those who don't speak or sign. In fact, touch is often used against residents, for control, manipulation, and convenience.

On my first night at one of the homes, when one of the residents became overwhelmed and started walking quickly around the home, flapping and agitated (but not harming himself or others), I watched a staff member try to "calm" him by aggressively grabbing his arm and trying to overpower him. In another home, a staff member with her arms full and talking on her cell phone sought the attention of B, the Deafblind and multiply disabled woman I mentioned above, by forcefully kicking the bottom of the recliner she was relaxing in and then, a bit less forcefully, B's leg.

And even if everyday experiences of touch aren't explicitly harmful, do they facilitate increased comfort and joy? Partnering with developmentally disabled folks to increase their access to joy, pleasure, and relaxation within their own bodies is radical. Bodily ease and pleasure is even more radical when we take into account the particular vulnerability to trauma that disabled folks live with, in an ableist society.

Massage, with its intimacy and dense interpersonal dynamics, is rife with opportunities to subvert harmful power structures. I hold listening to my clients' communication--however that communication works--as the guiding force of our sessions. I can't listen with all my senses without paying attention to all my senses, so, again, I do my best to stay mindful of my own body, in order to best serve my clients.

Imagine, after years of being acted upon, being deferred to as the actor in charge, the boss--especially with a professional from the medical/therapeutic world. It's subversive. It's also as it should be. I learned a lesson about power & affirmation recently. I commented to a client with intellectual and physical disabilities, "Wow, M, your forearm muscles are really tight." This client rarely speaks, and her linguistic ability is quite limited. But she did speak, then. You know what she said? "I'm sorry." I was humbled. My intention of simply exploring her body's tissue together had gone awry. Of course, I realized, unlike me, whose disabilities are invisible, she's probably had years of people in power explicitly and implicitly telling her that there's something wrong with her and her body; that she's not enough. "M, you never have to apologize for your body here," I responded, and I apologized for accidentally making my comment sound like a judgment. "You are perfect exactly how you are! You are beautiful," I continued, hoping I wasn't going overboard, that she could sense my truth. Sonya Renee Taylor's poignant phrase, "your body is not an apology," came to my mind.

being flexible, creative & adaptive--and paying attention to my own body through it all

For many of my clients, I've needed to (read: had the opportunity to) toss out my implicitly held "shoulds" of a session. I've often adapted things that might seem like they're inseparable from massage itself.

A session should be an hour long. The client should stay relatively still. I should incorporate the full body in a session. We should be the only people in the room... and it should be quiet, with no TV and no radio. It should be on a massage table. Wait--this muscle should be here--why isn't it? Even: I should be manipulating the tissue, not just sitting there, holding someone's hand.

That's right--on days when H makes it clear that it's his preference over "typical massage," I've spent large chunks of time just holding his hand. I've also spent large chunks of time--the majority of sessions--sitting on the couch while P walks in and out of the room, gathering himself to be touched again for a minute or so at a time. I've spent a dozen or so entire sessions rubbing little circles only on the right side of S's head.

I've developed better skills at listening to folks' tissue. Most of my clients' anatomy differs very much from the anatomy I learned in books. And while my education in anatomy has been invaluable in approaching my clients' bodies and understanding where they might need pain relief or tissue softening, I keep coming back to the fact that the answer is in listening to exactly what's there, not in superimposing an external image onto clients' bodies.

Speaking of listening to tissue--I've also been finding that, to bolster my creativity and adaptability as a practitioner, it's been vital for me to listen to my own internal experience in a twofold way:

First--and this is quite pragmatic--I have to listen to my body about what are healthy body dynamics. Because I do adaptive massage wherever my client is--most frequently, it's in a wheelchair, sitting on the couch, or laying in bed (I don't use a massage table, for access reasons), I can't use formulaic body positions for my strokes. This is a quite challenging part of the work for me. My body hurts after sessions sometimes. But, once again, my faith in somatic awareness shines through, because the more in tune I am with my own body during the session itself, the more intuitive and comfortable dynamics will emerge from within me. To borrow a phrase from somatic psychology, with adaptive massage body dynamics, I do my best to employ "bottom-up," intuitive processing of information from within, rather than a "top-down" approach comprised of intellectually understood poses or positions.

The second way I try to pay attention to my internal experience is to witness my own discomfort with "breaking the rules" of massage. What beliefs pop up, and what does it feel like in my body, when a client gets up in the middle of a session and walks away to go switch out the toy he uses for sensory stimulation?

Hmm... a sense of guilt in my belly, for not maintaining touch the whole time...am I giving him his money's worth?... a sense of heavy rejection in my chest, because he's clearly not enjoying the session... if I were doing a better job, he'd not need the stimulation of a different toy... a mild, buzzing, fear...is the group home staff judging me?

Phew... it's unbelievable the voices and sensations that come up in a matter of seconds--even thoughts that I know in my intellectual mind are ludicrous! And, as difficult as it is to let them share space in my conscious experience, I know that if I don't take care of myself by deepening my capacity for awareness of my own experience, and let what's there be there, some parts of myself will eat other parts of myself alive, and I won't be able to continue doing the work. I don't want to stand in my own way. Somehow, when I let my discomfort be, it's not so scary, "breaking the rules." In fact, from my experience so far, that's when I do my best work.

***

I deeply appreciate anyone who's read this far, and I thank you for engaging with me about massage with developmentally disabled clients. It's a topic that's both near to my heart, and something I'm constantly learning about. I feel grateful to my clients for sharing their time, bodies, minds, and vulnerability, and I hope to be of service towards a more just world.

All my best,

Sarah

 [image description: a pink and red abstract background with lines that look like veins has black words printed in different fonts covering the whole image. The words--with each concept in its own writing style--say: intersectionality, leadership of those most impacted, anti-capitalism, cross-movement organizing, wholeness, sustainability, cross-disability solidarity, interdependence, collective access, & collective liberation.]  image from Sins Invalid: https://www.facebook.com/sinsinvalid/photos/pcb.10153165516638985/10153165515298985/?type=3&theater

[image description: a pink and red abstract background with lines that look like veins has black words printed in different fonts covering the whole image. The words--with each concept in its own writing style--say: intersectionality, leadership of those most impacted, anti-capitalism, cross-movement organizing, wholeness, sustainability, cross-disability solidarity, interdependence, collective access, & collective liberation.]

image from Sins Invalid: https://www.facebook.com/sinsinvalid/photos/pcb.10153165516638985/10153165515298985/?type=3&theater