I wrote this for NOS Magazine, but they were unable to take it. It’s a little dated now, but I think it’s still worth posting. Hope you like the links!! – Cal

 

By now you’ve probably heard about Niko Boskovic from Oregon.

He’s a teenage blogger who entered an essay contest for a spot at an international gathering of high school students at the United Nations, where they will get to know one another and the U.N. It’s called the U.N. Educational Pilgrimage for Youth, Inc. (UNEPY). He won. “I rely on a letterboard to communicate,” Boskovic, who is autistic, told me.  Doing something similar to what J.J., the teenage character on Speechless, does, he spells out words independently, and someone who is trained to support his letterboarding – a family member, teacher or aide, or a classmate – reads them aloud and/or writes them down so that people who aren’t comfortable reading letter by letter can understand him.  So his family requested that his mother be allowed to accompany him as a support person, and the family prepared to pay for her expenses out of pocket. “They should have let me participate with my mom supporting my communication, and looked at it like an opportunity to bring insight that has been missing for the entire duration of the program.”

The UNEPY organizers did not seem to grasp the request for reasonable accommodation.  Instead, they informed the family that Boskovic and his “chaperone” – a word which suggests they believe she would be there to limit his freedom rather than promote it – would be excluded. Although the program has not put its reasons in writing, Boskovic’s mother, Loreta Boskovic, told Oregon’s Fox 12 TV station that the gist was, “We can’t support people with disabilities. We’ve had people in wheelchairs before. We’ve turned them away too.” UNEPY did not respond to a request for comment for this story.

An attempt to reach UNEPY itself for comment was not successful, but it is run by one of the loosely associated lodges of the International Order of Odd Fellows (IOOF) and on April 30, in a public notice on a Facebook page, the IOOF reminded the world that, while they do not speak for UNEPY, “The UN Pilgrimage is mostly a ‘volunteer-run’ event. One of the reasons [for Boskovic’s exclusion] is probably because most of the volunteers are not equipped to handle special needs children and the risk involved if something happens to the child during the tour. ‘IOOF is damned if it does, IOOF is damned if it does not.’ If it does allow and something happens to the child during the tour then IOOF will be sued and blamed why it allowed the child to participate when it is aware that it does not have volunteers who are well-equipped with the skills and training to handle special needs child [sic]. If it does not allow, then it will be blamed and accused of discrimination. This is the price of democracy.”

Actually, that’s not the price of democracy. It’s part of the price of the struggle for equality.

The authors of that message are also completely missing the fundamentals of disability rights. If Niko Boskovic had participated unsupported and “something” had gone wrong that justified a lawsuit, his parents would have sued for failing to accommodate him, not failing to discriminate against him. If support is available to neurotypical participants, it should be available to neurodiverse participants as well. Nor is it possible that the real issue is that there was no-one to support Boskovic, since the accommodation he requested and was denied was the opportunity to provide his own support. Turning away a delegate who had already qualified to participate is not okay.

Fear of litigation, however, is not a new reason for the exclusion of disabled people. In fact, it is a major reason for the severe underemployment the disabled community faces.

Some members of the IOOF Facebook page have pointed out that IOOF members have a history of supporting Autism Speaks and autism awareness, perhaps in the mistaken belief that this demonstrates their support for autistic people. This may be part of the problem, as Autism Speaks is known, among other things, for excluding autistic people, both from leadership positions in the organization and from the benefits of their fundraising. And in the past they have certainly promoted the idea that “something” might happen.

Many other IOOF members, however, have spoken up for Boskovic. “I find it so unacceptable I will not leave any stone unturned until I find the correct answer and this is been taken care of so as a past grand of [my lodge] know that I will be making contact throughout odd Fellowship to find out more about this travesty,” one member posted to Facebook. Another stressed that there are disabled Odd Fellows. Boskovic himself reports that all the lodges in Oregon support him and requests that supporters thank their local Odd Fellows.

Filmmaker Dominick Evans, a disability activist and father of an autistic activist-in-training, agrees. “I think it’s BS. He won the contest. He shouldn’t be excluded because of his disability.”

UNEPY should have predicted that it wouldn’t be that easy. Niko Boskovic’s essay had warned them about his passion for justice. volunteers are “not equipped” with knowledge and skills to handle special needs children and the risk involved if something happens to the child during the tour.

We can only hope that the Executive Director of the UN Pilgrimage or the Sovereign Grand Master (if he is involved in the decision-making) to release an official explanation.

His family contacted Oregon’s Protection & Advocacy system, Disability Rights Oregon for help. “I haven’t seen anything this blatant in a long time,” Boskovic’s lawyer, Gordon Magella, told a KOIN 6 News reporter. “You know, it’s 2017. The ADA has been around for almost 30 years, and to see something so profound and blatant was just surprising to me.

In fact, it’s even worse than that. The Odd Fellows are a group you might expect to be inclusive. There’s a lot that’s cool about them. The group derives from a centuries-old tradition started in Britain to address problems arising from the Industrial Revolution. The American version “has focused on visiting the sick and providing members and their families with disability, illness, and death benefits—programs similar to Social Security, unemployment, and Meals on Wheels. It’s ironic that an organization long committed to serving people with disabilities would exclude a prize-winning student from a trip to the United Nations simply because he has autism and relies on a support person to communicate on an equal basis,” Sarah F. Rose, an associate professor at the University of Texas at Arlington and author of the recent book No Right to Be Idle: The Invention of Disability 1840’s – 1930’s told me. So how did this happen? It’s worth noting that they stress charity. Perhaps it’s the organization’s grounding in a charity model of disability rather than a rights model that has led UNEPY organizers to this point.

But the exclusion of people with disabilities is not rare. Recently another case was in the news: Megan Wolanyk, a California student who uses a wheelchair, was  left behind when her classmates went to Disneyland, because her school had rented a bus without a lift to transport them. Most situations are never publicized. Decades after Americans won civil rights protections in education, housing, employment, and all areas of life, exclusion not merely remains but is championed and advanced. And while Niko Boskovic is weathering this affront, not everyone else is as successful.

Exclusion is an important risk factor for depression in disabled kids. “Despite all the many challenges these children face in relation to their chronic medical or developmental diagnosis, being bullied or excluded by their peers were the factors most likely to predict whether or not they reported symptoms of depression,” Margaret Ellis McKenna, MD, a researcher at the Medical University of South Carolina is quoted as saying in a story on the American Academy of Pediatrics website.

In fact, as Dominick Evans stresses, exclusion can be deadly, for both kids and adults. “Exclusion is a major catalyst [for suicidality], especially when it happens consistently over and over again.” It’s a part of “all the crap we hear about how disabled lives are not worth living or how disabled lives are too hard to lie.” And all the crap is not true: while this comes as a surprise to many nondisabled people, disabled people with adequate social and environmental supports often report a very high quality of life. Evans is a member of the team at the Center for Disability Rights that recently unveiled #LiveOn, “an anti-suicide story project, where disabled people, including those with invisible disabilities, chronic health disabilities, and neurodiverse people, tell their story and encourage other disabled people to keep on living.”

Anita Cameron, an autistic disability rights activist and Not Dead Yet organizer, who also works on the #LiveOn project, told me that this the initiative is similar to the It Gets Better anti-suicide project. “It shows that life as a person with a disability can be a good life and that things do get better that if someone is newly disabled that they can carve a good life out for themselves. We’re trying to counter the ‘better dead than disabled’ mentality.”

Indeed, with the support of family, friends, disability activists and Odd Fellows, Niko Boskovic, like so many other disabled people and our loved ones, is continuing to work for justice. “What this decision does is make it all the more difficult for neurotypicals to gain knowledge and insight into what it is like to live with a disability. This, to me, is the real hardship that this decision imposes.” He has made plans to go to New York whether or not he goes as a UNEPY delegate, and has invited President Obama to meet with him “to share my vision of what autistic citizens can contribute to their country.”

It’s good to have you in the community, Niko.