August is Spinal Muscular Atrophy (SMA) awareness month. SMA is a genetic disease that affects the motor nerve cells in the spinal cord, hampering the ability to walk, eat, or breathe. It can be lethal in infants. Until recently, I was only vaguely aware of the disease. That changed when Michaela, a member of The Correspondent from the US, replied to a newsletter in which I wrote about touch deprivation – a painful psychological fallout of the coronavirus pandemic.
Michaela lives with SMA and told me she has a “love-hate relationship with touch” in her everyday life. She lacks the strength to initiate social touch, and her wheelchair often acts as a “shield” in people’s subconscious. Michaela’s story pushed me to dig deeper into how touch deprivation might be a new feeling for able-bodied people, but has been all too familiar for those living with disabilities. And how it is a metaphor for deeply entrenched social inequities, injustice, and exclusion.
When Nipun Malhotra was a child, his mother devised a routine for him. She would take him to the kitchen and make him touch pulses, rice grains, fruits and vegetables.
Malhotra was born “blue, fractured and bleeding” owing to a condition called arthrogryposis, which leads to underdeveloped muscles in the arms and legs. A doctor told his parents he would live “the life of a wooden doll”, but they were determined to give him a “normal life”. And those little exploratory trips to the kitchen were a big part of that.
"I was lucky,” says Malhotra, who attended some of India’s premier education institutions before setting up an advocacy body for persons with disabilities. “I was in a wheelchair and couldn’t jump around and touch things like other kids. But my mother brought everything to me, so I could develop a normal, curious relationship with the world. She knew something about touch that parenting manuals didn’t.”
As I wrote earlier in this series, there’s a huge amount of research showing that touch is the most critical sensory input for humans. But all that scholarship has a glaring hole: it rarely accounts for the experience of people with disabilities, who often have a complex relationship with touch.
Even during the current pandemic, reams and reams have been written about "skin hunger" or "touch deprivation" – most of it exoticising the condition. Once again, the stories of people with disabilities, many of whom were experts in living with touch deprivation long before the pandemic, lay ignored.
These are not aberrations. People with disabilities are 15% of the global population. They are the largest minority on the planet. And yet, almost everything that we must regularly interact with, from housing to public transport, workplaces and the healthcare infrastructure, is built by and for abled people.
For this story, I spoke with three people with locomotor disability, so it is by no means an exhaustive exercise. But what they shared with me made it clear that the invisibilisation of people with any kind of disability is a symptom of a deeper problem: those who are not “like us” simply don’t get a seat at the table where important decisions are made.
Is it any wonder that the world has become such a forbidding and dangerous place for so many?
Touch is about access and safety
Like everyone else I interviewed for this piece, Malhotra speaks matter-of-factly. But listening to him makes me feel like I’ve had giant blinkers on my whole life.
For instance, he stresses that human touch isn’t the only thing that shapes a child. “Schools these days talk a lot about ‘good touch’ and ‘bad touch’,” he says. “But it is just as important to learn about hot touch and cold touch and pokey touch. If a child can’t differentiate between those sensations, they could end up in serious accidents.”
Before talking to Malhotra, I mostly imagined touch as skin rubbing on skin. I didn’t pay much attention to the things that I spend most of my waking hours touching. I now know that’s because I don’t have to worry about not being able to access them, or about my safety around them.
I mostly imagined touch as skin rubbing on skin. I didn’t pay much attention to the things that I spend most of my waking hours touching
For those who can’t take that last thing for granted, even mundane, everyday touches could be a threat. In the UK, seven people with disabilities were asked to maintain diaries of their daily lives. Their stories revealed the painful reality of bodies constantly at war with the world: from luggage being piled up around their wheelchair on a train, to cramped shops with abled shoppers not looking where they’re going. One of the seven wrote about being “hit on the shoulders by a lot of handbags”.
Touch is about dignity and choice
Being jostled isn’t the worst that the experience of touch represents for people with disabilities. Priyanka De, who teaches philosophy at India’s elite Presidency University and has cerebral palsy, knows this well.
“I need quite a bit of help from others for my day-to-day activities,” she says. “But now that people are terrified of touching anyone, I have no idea how I will manage.”
Until now, De had a different problem: overeager strangers would offer help even when she didn’t ask. “Many have good intentions, but it is exhausting to constantly explain to people when I need touch, and when it is an intrusion.”
Her story reminded me of Sarah Waters, a worker in the UK’s National Health Services, who had to add spikes to her wheelchairs to stop strangers from constantly touching her. “It’s disturbing that there’s somehow this loss of body autonomy,” Waters says. “That I somehow belong to the world now and I owe everyone my story and it’s okay for them to touch me.”
Access to safe social touch which we tend to take for granted – hugs and handshakes – presents its own challenges. Micaela MacDougall, from Annapolis, Maryland, has spinal muscular atrophy, a genetic disease affecting the central and peripheral nervous systems and voluntary muscle movement. She is in a wheelchair full time and can only move her arms enough to eat or type on her phone.
MacDougall has a “love-hate relationship with touch”. “Unfortunately, most of the times I am touched are in the context of physical, not emotional care, so touch is often more of a practical thing than I want it to be,” she explains.
For instance, at the end of a lunch with friends, everyone goes around the table hugging each other, but she is often excluded from this. “Most people go about in an invisible bubble of personal space, and touch happens when two people each indicate through body language that they are willing to let each other into their bubble,” she says. “But my bubble is visible (my wheelchair), and I physically cannot reach my arms up outside of it. Without that signal, most people don’t even think to initiate any kind of touch – it just doesn’t enter their head.”
Asking for a hug in certain settings feels more like requesting a favour – “like I am singling myself out rather than joining the group”.
The body is a machine for production, and touch is its raw material
Touch has another dimension that we seldom pause to think about: it is the medium that we use to engage with the tools of work. People who lose an arm don’t just lose a limb. They also lose a vital raw material needed to be productive members of society. And yet people with disabilities, even those who have a certain level of privilege, have to daily fight ableist ideas of productivity.
“If we are given additional responsibilities at work, we might be told that’s not because we are competent but because we have more time since we don’t do any household chores,” says De. During lockdown, she has felt that people with disabilities are thought to be “having a good time while everyone else in the house sweats”.
MacDougall works in her father’s handyman business. She is too tired to work more than 15 hours a week. However, she points out that some people tend to think that she has more strength than she does, not realising that she often doesn’t have the energy for a simple handshake.
Meanwhile, there is a different kind of labour she has to put in that goes unnoticed by most: “It is surprisingly draining to have to constantly give people instructions about things like where to put my plate at dinner or how to move my legs so that I feel comfortable.”
De adds that people with disabilities are often judged by a crude stereotype – that they are mentally strong to compensate for their physical disadvantage. “It is unfair. Imagine if on top of my disability, which people anyway suspect I misuse, I had to tell my employers that I am depressed because of social isolation. Would they buy it?”
Touch is ultimately about inclusion
Listening to Malhotra, De and MacDougall made me realise that we need to teach this stuff to everyone. Never mind the pandemic – as journalist and novelist Paula Cocozza writes, modern society has a “crisis of touch”. “Touch is the first sense humans develop in the womb, possessed even of 1.5cm embryos. But somewhere in adulthood what was instinctive to us as children has come to feel awkward, out of bounds. In countless ways social touch is being nudged from our lives.”
What do you do if you crave social touch in a world where you can’t take it for granted? Malhotra says the answer for him is simple: just ask for it. “If I need a hug, I tell people I need a hug. I joke with them that my disability is not contagious!”
If touch is a metaphor for the different ways we show each other our place in the world, it’s time to learn how to do it right
MacDougall has also learnt to “be very intentional” about expressing her need for touch. “I live with my parents, and they are intentional about giving me touch that is purely affectionate and not related to my care, like kneeling or sitting in front of me and giving me a long hug. I have two small dogs that are hypoallergenic and cuddle with me every night in bed. I also receive massage on a regular basis – not as a medical treatment but more as a way to experience another kind of pleasurable touch.” During lockdown, her parents have taught themselves how to massage her via YouTube tutorials.
It is another story that MacDougall tells me that captures the broader system of exclusion that people with disabilities have to live with: “I was once buying movie tickets. I had been speaking the whole time, but the cashier still looked at my caregiver and said, ‘Will she stay in her wheelchair or transfer to a seat?’ It’s actually become one of my favourite jokes to refer to myself in the third person.”
If touch is a metaphor for the different ways in which we show each other our place in the world, it’s time to learn how to do it right.