Month: June 2017

Senator Young, Please Oppose the Bill

/ montgomerycal / Leave a comment

Today disabled people are calling on Senator Todd Young of Indiana to ask him to oppose the health care bill. I sent him this letter.

If you would like to let Senator Young know what you think, you can reach him here: http://www.toddyoung.org/contact

 

Dear Senator Todd Young,

     Please oppose the Senate health care bill.
     If it becomes law, millions of Americans will lose health coverage because it will be priced out of their reach.  The CBO predicted 23,000,000 under the House bill, and the Senate bill is worse.  This will result in thousands of preventable deaths in the near future … deaths like Amy Schnelle’s. Amy Schnelle was 15 when she began to have seizures. She finished school and went to work in a factory, but she continued to have debilitating seizures, and eventually she couldn’t work any more. She went on Medicare. After 15 years of seizures — half her life — she got them under control. So she was removed from the Medicare rolls. She tried to work with the drug companies and several did help her, but one did not, and she began to have seizures again. She went to her Congressman and he helped her get back on Medicare, but she died following a seizure before the meds got her condition back under control. Please oppose the bill to prevent what happened to Amy Schnelle from happening to your constituents.
     If it becomes law, it will be even harder for many Americans to get out and stay out of institutions. Geraldo Rivera uncovered what was going on at Willowbrook State School back in the 1970’s, and Willowbrook was not an aberration. Institutions are notoriously understaffed, the employees are underpaid, and the lives of people in them are run according to the needs of the administration. At Willowbrook, for instance, because there were so few staff, children who could not feed themselves had food poured into their mouths at a rate of 3 minutes per child per meal. This resulted in several deaths from choking and aspiration pneumonia every month.  Please oppose the bill to prevent what happened to the children of Willowbrook from happening again.
     Nursing home residents struggle to cope with poor staffing and lack of resources as well: I was in nursing homes this winter, ones the hospital said were good. I was in one to get physical rehab so I could get strong enough to return home and care for myself. “You can have as much therapy as you can tolerate,” one assured me, but physical therapy was capped at 3 20-minute sessions a week. I atrophied. In another, my roommate, a neighbour from Chicago’s South Side whose son, a professional, visited her every day, was confused for hours until I realised the staff hadn’t noticed she was blind. I had been admitted specifically to certain places because I needed lymphedema care, but none of the facilities I was in had the staff or supplies to provide it, and I ended up back in the ER twice as a result.  Please protect your constituents from what is happening to the elderly of Chicago’s South Side by opposing this bill.
     And that is when everything is going “right.” A distressing number of Indiana nursing home employees posted images of patient abuse on Snapchat in 2016.  How many more cases were never discovered? Esmin Green died of blood clots after she had been admitted to a health care facility but waiting for a bed, writhing in front of a surveillance camera while nobody noticed. Just recently another abuse case was exposed at the Judge Rotenberg Center, where staff had been abusing a disabled resident — this at a facility where repeated electric shocks are standard operating prosecute. Disabled Americans have fought to get out and stay out of institutions in order to live good lives, go to school, hold jobs, raise families, pay taxes, and contribute to our communities — and it is cheaper per person to support people in their own homes to institutionalize them, but states prefer institutional options.  Michigan employee and homeowner Chris Meadows just learned that the Medicaid services he needs to stay free have been cut. He has lived on his own since college. I personally know many disabled people who have good lives and who make their communities better places because they have services through Medicaid. Please oppose the bill to prevent what is happening to Chris Meadows from happening to your constituents.
     In the last 35 years or so, IQ scores for people with Down Syndrome have gone up 20 points and they are living decades longer.  Today Americans with Down Syndrome are doing all the things other Americans do. This is not due to changes in people with Down Syndrome or to medical developments: it’s due to people getting food services in the community rather than being institutionalized.  Please help disabled Americans continue to make these gains by opposing the bill.
     If it becomes law, many people will not even be able to stay in nursing homes.  They will go home, where their families, already struggling, will be unable to care for them.  This is already happening; as older Americans and those with pre-existing conditions face higher premiums they will be forced out of the health care sytem.  Joey Bishop was 18 when he died. He had muscular dystrophy, as do many leaders in my community.  But Bishop lived with a family that did not care for him. Bedsores are largely preventable and treatable, but Bishop’s were not treated and he developed infections and became septic … and died.  Although his family is charged with deliberate neglect the same thing will happen to many of your constituents if this bill becomes law. Please oppose it.
     If it becomes law, children with disabilities will lose access to the supports in school they need to reach their full potential. Developmental windows will close. An easy place to see the consequences of lack of education is in the Deaf community. Many deaf children today in oral programs never fully master any language at all because they do not learn one in the critical language-learning phase — because they are denied access to sign. Blind children who are not taught Braille often never learn to read as well as they should; it cannot be learned as easily in adulthood. Without the supports Medicaid provides to schoolchildren a large number of the current generation will be unnecessarily limited for the rest of their lives.  Please protect your constituents’ children and your state’s future and oppose the law.
     If it becomes law, people who want to get off drugs, people like Rush Limbaugh and high school athletes who have been prescribed painkillers and my own mother and grandparents, will have an even harder time finding treatment. They will suffer and die, and their family members will suffer. The nature of addiction is that willpower is not enough. Please do not abandon these desperate people. Please oppose the bill.
     The ACA is not perfect and there are legitimate political disagreements between you and me over how best to govern this country. I understand you are going to do things I disagree with because you believe in them and I respect that. But this is different: the suffering and death and devastation that the bill you are now considering will rain down on the 10% of uninstitutionalized Americans with severe disabilities — a community any American could join at any moment through no choice of their own but from accident, illness, age or act of God — not to mention the entire institutionalized population are unimaginable. If it becomes law, it will hurt and kill people. Millions of people. It will impoverish families for the crime of a baby being born with a heart condition or a child getting leukaemia or a parent being injured at work or a grandparent developing Alzheimer’s.  It will drive people to suicide, as Oregonians who cannot afford cancer meds are choosing suicide today. Please, please do not do this to America.  Please do what is right for your people this week and oppose the health care bill.
Sincerely,
Cal Montgomery

 

 

Niko Boskovic and the Order of Exclusion

/ montgomerycal

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.