MIT Assistive Technology Design

“A child is only as disabled as their environment and the beliefs of the people around them.” – Bala Pillai DPT, PCS

“I love water.” I pointed to myself, made a heart, and then splashed at the deaf girl wearing a small floatation device. Her laughter ricocheted off the walls, temporarily masking the sound of waves crashing against the side of the pool. Her aide looked half amused, half stern as she gestured to the wheelchair, indicating that aquatic therapy time was over.

Last spring break, I volunteered at Crotched Mountain School, a rehabilitation center and school for children with a variety of physical and emotional disabilities. There, I was able to work in the aquatic center and follow them on land in their day-to-day educational activities. The ~100 students at Crotched Mountain had:

• a personalized educational program tailored to their individual abilities
• access to some of the best occupational therapists
• a staff to student ratio of 3:1

All to assist them in become independently functional adults.

A sip-and-puff wheelchair for those with limited motor functionality.

It was also a high-tech hub, with AAC devices for students with a communication disability and sip-and-puff wheelchairs for those with cerebral palsy. The week I was there was coincidentally also Spirit Week, and the children were treated with wheelchair basketball games, school dances, and the typical set of events found at a traditional secondary school.

As if the place was a semblance of normality. A utopian world for people with disabilities.

Basketball Games During Spirit Week

But not quite. Crotched Mountain is part ski resort, part rehabilitation center. While on one side of this mountain, we individuals with two properly functioning legs can enjoy a leisurely afternoon zipping down the trails, on the other side the daily challenges the inhabitants experience go largely unnoticed.

While these children were surrounded by some of the best therapies and assistive technology devices to help them lead more independent lives, they have become cutoff from the rest of society—treated more as patients than as students. Isolated from us, they are less exposed to the prejudices against disability rampant in society; but, in turn, the rest of society is less aware of the true abilities of the disabled and retain their biases, as a result.

I don’t want to write a whole “call to action” for people to change their biases, because the scope of that project would be enormous. So instead, I ask to step over the boundaries of segregation and go see for yourself the beauty and verve on the other side of the mountain.

Then perhaps together, we can push for a more inclusive, more accepting, more integrated environment that all can live in.

In a 2003 study done by the NCS, nearly half of American adults reported meeting criteria for a mental illness (ex. anxiety or mood disorder), with around a quarter meeting criteria within the last 12 months. Mental health issues significantly affect quality of life, and are one of the most common disabilities in the US, but they are often stigmatized and not taken seriously. Take for example, this Buzzfeed video:

Because of both cultural perceptions of mental health issues and the lack of availability or cost of therapy, many people suffering from mental illnesses go untreated. In my own depressive episodes, I’ve been reluctant to go to therapy for these exact reasons. But as the internet has become more pervasive, many sites and online services have begun trying to address this gap in treatment.

One of the pioneers in the field is Australian site MoodGYM, which has offered free online Cognitive Behavioral Therapy (CBT) since 2001. A study on the program observed users of the site exhibiting depression that had no outside contact with therapists made statistically significant improvements in their mental health.

However, one of the main problems associated with self-directed online programs like MoodGYM is the dropout rate. Many users never log in for a second session. There are over 122 mental health startups, many of which try to address this problem. In one of these startups, Joyable, users are assigned dedicated coaches and have scheduled check-in sessions over the phone or online to supplement CBT. Joyable’s monthly subscription cost is $99. To put that in perspective, an average therapy session can cost $90-$250. Many mental health startups aim to offer a more affordable, accessible alternative to traditional therapy.

Hopefully, these new assistive technologies will help bridge the gap between treatment and the millions of people with untreated mental illness.

X AMBASSADORS 

Perhaps you’ve heard the term “inspiration porn” used to describe popular media portrayals of individuals with disabilities. Essentially, the phrase critiques the tendency to refer to individuals as “inspirational” solely on the basis of their disability. I think this quote (full article in the link) sums up the sentiment nicely:

It’s not that deaf and disabled people don’t have to battle with all kinds of barriers in life – of course we do. It’s the fact that society seems to seems to forget that it’s often the world around us – physical barriers, communication issues, or attitudes – that are far more “disabling” than the disability itself. Non-disabled people may feel inspired by the idea of us “overcoming” or “beating” our disability, but we wouldn’t have much to overcome if society treated us more equally.

On one hand, there is a severe lack of disability portrayal in the mainstream; on the other, depictions that focus solely on disability as inspiration fail to advance inclusion by neglecting all the other dimensions that make an individual unique.

Enter X Ambassadors. (Pause for 4 minute jam session.)

Notice that the video doesn’t lionize its cast members; the introduction is provided by a woman who states, “I want to be expected to do what everyone else is expected to do.” The footage is pretty mundane, by music video standards. People are lifting weights, hiking, and playing the key board in a rock band, all of which are things that I do in my own life. (Ok, minus the rock band.) I think that’s why it feels so deeply successful to me: I watch the video and manage to see myself.

What if that was the standard formula for inclusion?

A week ago, right before Halloween, we had a lecture on the aesthetics of assistive technology. We talked about the current issue of most assistive technologies being designed mainly for function, with little regard to aesthetics. A reason for this is that assistive technologies are often viewed more as medical devices than personal items. Because of this, many people are reluctant to use assistive technology, even if they could benefit from it, because of the stigma that exists.

A nonprofit called Magic Wheelchair addresses this problem beautifully. Magic Wheelchair is an organization that transforms wheelchairs into amazing creations that children who are users of the wheelchairs can use as costumes for Halloween. Ryan Weimer, a father of three boys who use wheelchairs, started this organization initially for his sons. A great thing about these costumes is that they don’t try to mask the chair with the costume. Instead, the costumes are designed around the wheelchair, fully integrating it. Some of the creations from this organization include the dragon Toothless from How to Train Your Dragon, a Mario Kart, a pirate ship, and many more.

Each wheelchair creation takes anywhere from 100-200 hours to make. Although some may think that the time can be better spent elsewhere because the costumes are usually worn only for one day on Halloween, I think that the time and labor is well worth it. It allows the child not only to be happy, but also to feel included and decreases stigmatization against them. “It’s a cure for a day…It helps other people see them as a kid, not a kid in a wheelchair”, says Weimer.

To learn more about Magic Wheelchair, to make a donation, or to volunteer, visit their website here.

Assistive technology is a niche market, which often makes it difficult to find sufficient funding and resources for it. How can we increase awareness and interest in addressing this important challenge? The rise of hackathons seems to be a promising step for promoting the development of assistive technologies and increasing awareness about the challenges facing people with disabilities. While the hackathon model seems promising, its method of implementation has a large impact on its success in advancing assistive technology.

For example, I am an organizer of HackMIT, a 1000-person hackathon for undergraduate students from around the world. The structure of HackMIT and availability of sponsor prizes incentivizes students to vie for flashy, impressive hacks that are fully functional by the end of a weekend. There is a larger push for developing a high-fidelity product in a short period of time, which differs vastly from the iterative product design process that assistive technology production requires. ASLTegra, a sign language interpreter app, is an example of an assistive technology that was born from HackPrinceton, but in general it is rare to find hacks that address a disability.

ASLTegra, a sign language interpreting app developed at HackPrinceton (Source: http://devpost.com/software/asltegra-the-eye-of-the-tegra)

ATHack, meanwhile, is a more successful model of a hackathon that results in tangible assistive technologies being developed. Unlike HackMIT, ATHack pairs students with clients, enabling them to focus on a specific problem. This is critical for assistive technologies in particular, which are difficult to generalize to an entire population and often need to be customized to the user. Moreover, the hackathon places less stress on creating a finished product, instead focusing on prototypes, which is much closer to the product design process. Puffin, a mouth-enabled smartphone joystick, is an example of an assistive technology that was born out of ATHack as a prototype, and was later developed into a fully-fledged product.

Puffin, a sip-puff joystick developed at the ATHack hackathon (Source: http://news.mit.edu/2015/perspective-athack-assistive-technologies-hackathon-0601)

On a general level, hackathons are an excellent opportunity to rapidly generate and test ideas. But in order to promote developing assistive technology, it is critical to have a specific focus for the hackathon, engage with clients who are the target audience, and structure the process around iterative design. Without these characteristics, participants are less likely to find motivation to work on assistive technologies.

Steve “Ste” Walker looks like your average man.

However, he has Crohn’s disease, a condition that makes everyday tasks incredibly taxing. Unfortunately, because most people cannot tell from looking at Ste that he is coping with a disability, Ste often finds himself in frustrating situations. For example, the other day, Ste was at a hospital shop in Yorkshire, England when someone asked him why he was there despite looking perfectly healthy. When Ste went home that day, he wrote about his frustration in a Facebook post.

In his post, Ste lists the numerous procedures he has had to deal with because of Crohn’s disease:

• He has a Hickman line coming out of his chest and resting in his heart to feed him on TPN.
• He has a rhylls tube down his nose and into his stomach to help drain his stomach.
• He has a scar from 3 major life-saving surgeries that go from the center of his chest to the top of his pubic bone.
• He has an ileostomy, which is a section of small bowel that comes out of his abdomen and attaches to a stoma bag to collect feces.

The list goes on and on. In addition to the physical complications, Ste also fights a mental battle every day. He hasn’t been able to eat a meal in 2 years, and he has only been able to spend 4 weeks at home in the past 18 months. It’s no wonder why it’s so frustrating for Ste to hear strangers question why he uses the toilet for people with disabilities or parks in spaces reserved for people with disabilities. It’s all the more exasperating when people automatically assume that he is “conning” the system.

Ste’s post has helped raise awareness about invisible disabilities and is a good reminder that we often don’t know what people are facing below the surface.

The Bug Club, we called it. In kindergarten, my best friend and I would spend all of recess playing in the grass, the mud and the woods, looking for bugs and insects. Sometimes we secretly stole fruit from the cafeteria and left it out to attract bugs; sometimes we built little clay homes for bugs. It was our own world and it was our way of interacting with the world.

As we grew up in elementary school, we became more and more distant. My best friend, who we’ll call Hypot, began to have a mean streak; she would pinch, and poke me with a pencil, and laugh about it. I didn’t understand.

Not until years later, after Hypot had moved away, did I learn that she had been diagnosed with a form of high-functioning autism. She perceived the world in entirely different ways! It was profoundly eye-opening to talk with her, years later. Hypot once said that she knew she had a crush on someone, she just didn’t know who. One of her Facebook posts began with:

“YES. Autism is more than just a difference in social abilities. It has an effect on sensory processing, body type, metabolism, and all kinds of other stuff they haven’t worked out yet…the physical and chemical structure of the brain is different.
THIS IS REALLY COOL!”

I wished I had tried harder to understand her in elementary school.

Autism is especially complex, because it is both a vast spectrum of degree and a myriad collection of seemingly unrelated symptoms. For example, amazingly, 50% of autistic children also have problems with the GI tract.

How autism can impact vision

This complexity makes Autism particularly difficult to develop assistive technologies for. Recently, however, a neuroscientist named Ned Sahin realized that the technology of Google Glass could be harnessed to help autistic children learn. Sahin founded a Cambridge-based start-up called Brain Power which develops several applications on Google Glass for autistic children.

For example, one application visually highlights eyes, because autistic children sometimes have difficulty learning to make eye contact and will focus on someone’s mouth instead. Another application involves classifying people’s expressions.

Classifying emotions with Google Glass

This is indeed really cool.

In my last blog post, I talked about disadvantages of living with a disability in Cyprus. This time, I want to share something more positive. Mustafa Celik is a friend of my father’s. Once he was a famous man on the Turkish side of the island. He was a star soccer player when in 1982, at age 19, the car in which he was a passenger rolled over. He agreed to share his story with me for this blog post.

After his accident he was depressed sometimes to the point of suicide. And then one day, “My teacher asked me, “Would you like to play basketball?’ I said, ” What do you mean? Stop teasing me.’ So I met with the guys at the gym. It changed my life. I began to live again. Sports was something that was everything to me. So I stopped thinking about death. I thought, “I’m not finished.'”

Mustafa loves team sports. And advocacy to him is a team sport. One of his first accomplishments was convincing the Turkish-Cypriot sports authority to purchase 10 wheelchairs so the basketball team could compete internationally as it still does today. The team actually has gained a lot of reputation in the island, and they are very successful.

The National Basketball Team before an international game.

Mustafa says on the Turkish side of the island, advocacy is more a matter of persuasion than confrontation. “The Cypriot people are very very very good people. Mediterranean people as you know are warm blooded and they’ve got a very warm heart. As long as you show them something you really need, that’s it. They don’t fight you. But you have to push.” To me, this is another way of saying “If there is will, there is a way.”