“Empowering persons with disabilities and ensuring inclusiveness and equality.” It is a lofty goal and the theme of the United Nations International Day of Persons with Disabilities.

The UN began observing IDPD annually on December 3rd, 1992. This year’s theme ties in with the UN’s Agenda for Sustainable Development. The global agency recognizes that more than half the world’s populations live in urban areas and projects that by 2050 more than six and a half billion people will be living in cities and surrounding regions.

It’s common sense to include universal design in any remodel or new construction. But we don’t.

You would think that inclusion would be understood in 2018, but it’s not.

I spent the morning talking about inclusion with two classes of college students. I was asked to share with them my real-world experience as a parent of a child with a disability. Given the UN’s theme, I thought, why not share it here.

I had this idyllic, dreamy pregnancy with my first child. He had gotten the all clear from every non-invasive screening that was available in 2010. When he stopped moving at 39 weeks, my life came to a standstill as well. I met him ever so briefly after an emergency C-section and he was whisked away.

When I was recovering, the pediatrician told my husband and I that he suspected Arlo had Down syndrome. It was like he dropped a bomb on our hearts. We cried. We went into mourning. And we started researching.

It was the most difficult time of my life. I can still feel that abyss I plunged into. I knew I would feel better. I just had to get through that pain.

Now, 8 years later, I know why it was so devastating to find out my child had a disability. It was the first time in my life I had ever met anyone with one. When I was in school they took different buses to different schools. Parents were encouraged to put their kids in institutions. We didn’t talk about it. I didn’t know anyone who used a wheelchair, I didn’t know anyone who was deaf, and I had never met anyone with Down syndrome.

We are conditioned to not just hide from disability, but force people with disabilities into the shadows. It starts as early as preschool. We segregate 2 and 3 year olds.

Children enter elementary school and parents start arming themselves with information just to send their kid to Kindergarten. The fight to include children with disabilities starts when they still take naps in school. In our “modern” times – schools like to suggest we segregate kids who are different. There are schools in Virginia and other parts of this country that take pride in bussing students with autism to specialized classrooms.

For the kids that are included – what many experience is what I like to call “token inclusion.” They participate in music, art, and gym. Or they have lunch with their peers, often at a separate table. I spoke with an educator once who proudly told me that children with disabilities attended school concerts and plays. When I asked her why they weren’t actually IN the play or concert, she had no answer.

Even for my son and others like him who are fully included in a general education classrooms, materials aren’t modified appropriately. Oftentimes it is clear the teachers don’t believe that students with disabilities belong. They do not presume competence. While they might be in the same class with their peers, they aren’t learning because no one is truly trying to teach them. Materials are not adapted in a way that makes the lesson plans accessible.

Our children are included because schools are legally required to do so. Inclusion exists in schools, but rarely is it meaningful.

When we venture outside the classroom, into the real world where there are few legal requirements for inclusion, obstacles abound. Disability rights advocate David Hingsburger makes the brilliant point that we should never ask if we can be included because that allows others to think that ‘no” is an acceptable answer. The problem is, for many of our children, there are no supports in place to help them. So if we don’t inquire, we’re putting our children in danger. This ranges from chess club to soccer to summer camp. We don’t want to send our children to segregated clubs or camps, but we literally have no choice.

This is my perspective as a woman in her early 40s. I was curious what the early twenty-something students had to say.

A surprisingly small amount of them had students with disabilities included in elementary school; less than half. And they all said that number dwindled as they got older. They said they rarely saw peers with disabilities in middle and high school, let alone the college they attended. When they did, it was that token inclusion I had talked about – an appearance at lunch or in an encore class.

We talked about how disability is a normal, natural occurrence. How people with disabilities belong and how we need to adapt for them instead of them adapting to us. How the student in a wheelchair belongs in the classroom as much as they do. How someone who is stimming has every right to do so. How there is no reason a student who moans or makes noises should not be in a class, that we should learn to deal with those perceived disruptions. Rather than us expecting them to stop, we need to learn and accept that behavior, because it’s normal and natural.

I pointed out to the students that inclusion and equality comes naturally for children. I see it in my three little ones. They love and treat each other fairly. Even my 3-year-old understands that her oldest brother needs extra attention sometimes. Kids have a natural empathy toward each other. It’s the adults in their lives who taint that purity and good nature.

So as the UN works to ensure inclusiveness and equality in the infrastructure of our world, we must continue to foster that in the next generation. Keep working on the schools and our communities and our families. But really nurture this next generation coming up to understand disability, inclusion, equality, empathy, and perhaps most importantly, equity.

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