The United States Census reports that among the 53.9 million school-aged children (age 5-17), there are 2.8 million with a disability (5.2 percent). This number is accurate, compelling, but capable of being ignored, since the majority of children in school do not have a disability.
According to the United Nations Children’s Fund (UNICEF), “some 93 million children — or 1 in 20 of those aged 14 or younger — live with a moderate or severe disability of some kind.” UNICEF actually considers this number to be speculative since, “definitions of disability differ by place and time.” What this means to me, is a significant number of countries either do not track people with disabilities, or the families to which they belong are too ashamed to report them.
Given the dearth of data on children with disabilities, their true number cannot be known, but my guess is somewhere between 100 to 200 million children around the world have some form of disability. This means a population greater than many nations is suffering often invisibly, sometimes silently, but always more painfully than their typical peers understand.
I cannot speak for or completely understand those with disabilities, but as a parent of two children with intellectual disabilities my sensitivities have grown. While I consider myself a strong advocate for inclusion, there are significant steps we must take as a society before we can get there. Creating cultures and environments where we respect and uphold the dignity of those with a disability is a first step. This is achieved by changing how we see and work with those who have disabilities. Here are 4 tips I believe can help.
1) Emphasize Strength not Weakness
The UNICEF video below was 1 of 14 contest finalist in the “It’s About Ability” contest, where they asked young filmmakers to provide “a one minute video reflecting their perspective on disabilities.” This particular video highlights one of the most important things about working with people who have disabilities. We need to emphasize their abilities, rather than focusing on their disabilities. We need to help them discover their strengths and how they can contribute, rather than constantly emphasizing their weaknesses.
One of the best ways to help someone with disabilities see and use their ability is to practice inclusion (Read about the “Five Levels of Inclusion“). The best form of inclusion benefits everyone, because only when we see and value each others contributions can the whole be greater than the sum of its parts.
2) See Don’t Stare
Dr. Dennis Rosen writes in the New York Times describing his interaction with the parent of a child with special needs. In an article titled “Seeing the Child, Not the Disability,” he records her positive experience with health care workers compared to the average person.
“Yeah, you’re right,” she said. “I like the people in health care. People in health care, they don’t stare at my son like he’s some kind of freak, you know? They see him for who he is.”
Staring seems to be the default behavior when people see someone with a disability. This is interesting since the majority of parents teach their children not to stare because it is rude. Somehow the exception is when someone has a disability.
Dr. Rosen’s patient goes on to describe in detail what she experiences when people stare.
She took a deep breath and continued. “It’s different when I’m around other people. Either they make faces because they think he is too big to be in a stroller, or when he starts making his sounds and throwing his body around, they just stand there and stare. I feel like they don’t want either of us around and just wish we would go away.”
Everyone can learn to work with people who have disabilities, and an easy first step is “See Don’t Stare.” Dr. Rosen describes the “See Don’t Stare” mentality.
Faced with such a child in the park or at a restaurant, too many of us just stand there and stare. Instead, notice the twinkle in the child’s eyes, even if they are half-hidden behind smudged, thick-lensed glasses. Return the smile, even if it twists unusually or is wetter than what you’re used to. Wave back at him when he jerks his arms toward you, and say hello, even if it’s hard to understand exactly what she’s saying.
3) Include Don’t Ostracize
Inclusion goes beyond ‘integration’. The latter implies that children with disabilities are to be brought into a pre-existing framework of prevailing norms and standards. In the context of education, for example, integration might be attempted simply by admitting children with disabilities to ‘regular’ schools. This would fall short of inclusion, which is possible only when schools are designed and administered so that all children can experience quality learning and recreation together. This would entail providing students with disabilities with such needed accommodations as access to Braille, sign language and adapted curricula that allow them equal opportunity to learn and interact.
Once we move beyond staring inclusion is the next step toward helping those with disabilities. We must not only see children and adults with disabilities, we should include them. For this to happen we must overcome our feelings of inconvenience, because we know diversity is good for both those with and without disabilities.
Inclusion benefits everyone. To continue with the example of education, ramps and wide doorways can enhance access and safety for all children, teachers, parents and visitors in a school, not just those who use wheelchairs. And an inclusive curriculum – one that is child-centred and that includes representations of persons with disabilities in order to reflect and cater to a true cross section of society – can broaden the horizons not only of children whose disabilities would otherwise limit their ambitions or options, but also of those without disabilities who stand to gain an appreciation of diversity and of the skills and preparedness necessary to build a society inclusive of all. Where educational attainment leads to a job or other means of earning a living, the child with a disability is able to advance and to take her or his place as a full and equal member of the adult world, one who produces as well as consumes.
Absent teaching inclusion and creating a culture of acceptance people can easily ostracize those with disabilities. Rather than helping and working with them, people end up ridiculing and abusing them. The sooner we teach children acceptance of those with disabilities, the easier it will be for them to practice inclusion, and eliminate the mistreatment and abuse ignorance allows to prevail.
My own experience has been with a program called E-Soccer. This program teaches typical children to include those with disabilities as early as toddler age. The results we have seen are incredible as evidenced by some of our kids who grew up in the program. One group launched the E-Soccer program at San Jose State, and another published “Better Together,” a book for siblings of children with disabilities.
4) Innovation Not Frustration
The choice between innovation and frustration is one of the most important in our relationships with those who have disabilities. My own journey as a parent of children with special needs has forced me to make this choice, and I have seen those working with them face the same decision.
Communication is one of the challenges my son with Autism faces. The National Institute of Health estimates 7.5 million people in the United States are verbally challenged. When it became clear our son was limited in his communication ability, we knew this would demand our focus. His verbal limits exacerbated every challenge because he couldn’t communicate his needs, wants, or difficulties. We were forced to guess, making him dependent on our skills of comprehension, which from his point of view left much to be desired. At this point my wife and I made a decision. We were going to find a solution.
We discovered a tool called the Lightwriter while watching a CNN report called “Autism is a World.” This documentary told the inspiring story of Sue Rubin, a young lady with Autism who was considered intellectually incapable until she discovered a keyboard. When we saw her typing on the Lightwriter, my wife and I knew we had to provide this tool to our son.
The Lightwriter was so effective both of our sons with special needs began to use them. As time went on, we discovered the HP Touchsmart, which lead to an entirely new chapter in our communication journey. Finally, we discovered the iPad, which was transformative. We not only began to use the iPad, but I launched a startup to develop software for verbally challenged children and adults to find their voice. My sons like thousands of people around the world now use Quick Talk and Quick Type AAC by our startup Digital Scribbler.
Choosing innovation over frustration has transformed our family as well as the destiny of our children. The boys have their friends constantly communicating with them via iMessage, as well as when hanging out together having fun, working on homework, or going on a double date. Using innovation to eliminate frustration has improved our quality of life, and made it possible for our kids to experience comprehensive inclusion.
Neither I nor this post are perfect, but it is an attempt to change the way we think about working with children and adults who have disabilities. Go ahead and give one of these 4 tips a try.