disability

Improve Yours First, GCPD

You might notice that it took me several days to write about this year’s Annual Conference sponsored by the Indiana Governor’s Council for People with Disabilities, which concluded on December 9. Why was I holding my tongue? Although the year’s theme was “Improve Yours,” the Council did anything but. For the third year in a row, attendees listened to irrelevant speakers prattle on about subjects of little or no interest to people with disabilities.

The Conference opened with an address from keynote speaker Mayor Mick Cornett of Oklahoma City. Yes, a city outside the bounds of Indiana. Mayor Cornett could have shared ideas that he has explored for the betterment of people with disabilities, those that Conference attendees could take back to their hometowns for application, but instead, the Mayor gave a one-hour history lesson about Oklahoma City. Granted, it was entertaining. But I wasn’t there for a comedy show – I wanted to learn something.

In the final 10 minutes or so of his presentation, Mayor Cornett discussed the fact that he put his city on a diet. He was proud to announce that his constituents had lost a collective million pounds. How did they do this? The Mayor said that he didn’t want to take anyone’s food away, so he encouraged exercise programs. He used tax dollars to extend City bike trails. Great. Let me roll down to the bike shop in my wheelchair and get on that…

Fortunately, Conference attendees don’t seem to be willing to put up with terrible conference agendas anymore. Almost immediately, the Mayor was asked about visitability. When he began to discuss tourism, his questioner explained that visitability is a housing concept. If a home is visitable, someone in a wheelchair can get inside through at least one entrance and use one restroom. Sheepishly, the Mayor said that his condo was visitable. Other questions asked from a more aggressive approach regarded public transportation and Oklahoma City’s lack of sidewalks.

After a ridiculously long 2 ½ hour break, attendees were next subjected to an hour-long speech from Dr. Mary Patterson entitled Violence as a Health Issue. Not a single time in her entire address was disability mentioned. Instead, the speech called for reducing violence by getting involved in social programs. Clearly, it was aimed for residents of inner cities. Minority members of inner cities. And those minorities did not come from the disability community. What about theft from personal care attendants? Neglect and abuse against elders and other disabled individuals? Sexual abuse from caregivers?

Although completely ignored by Dr. Patterson, again, Conference attendees were not willing to let the issues drop. State Senator Michael Crider, Reverend Charles Harrison of the Ten Point Coalition, Steve McCaffrey of Mental Health America of Indiana, Director of Public Safety Troy Riggs, Stephen Viehweg of Riley Child development Center, and Gary Mayor Karen Freeman, members of the following panel, were left feel the wrath of unhappy attendees. To their credit, both Mayor Freeman and Director Riggs attempted to provide advice and assistance to the questions they were asked. Most of the panelists were clueless.

I don’t entirely blame conference attendees – speaking gigs are gold stars on resumes, so I why them down? No, I’m too cynical. These are community leaders, and many probably do have an interest in improving services for people with disabilities. They likely had a genuine interest in being part of the conversation.

Instead, the blame rests squarely on the Council itself. After all, don’t they choose the theme and agenda? Have they been listening to feedback from a crowd that gets smaller and smaller with each passing year? Perhaps not.

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“Compassion” & “Choices”: Killing People and the English Language

I’m saddened to see the Brittany Maynard story plastered all over Facebook. It’s sad that a vibrant woman, not yet 30, has been diagnosed with a terminal illness. It’s sadder that Ms. Maynard feels suicide is her best option. It’s perhaps saddest that “Compassion” & “Choices” is using the Maynard family’s crisis to promote its pro-death agenda.

Maynard and C & C are hoping to make suicide the latest viral sensation. The two are collaborating on a video project to garner support to legalize physician-assisted suicide in California. Aside from the ethical issues surrounding both suicide and involving doctors in its commission, I also object to C & C’s lobbying tactics.

In this People magazine article, Maynard is quoted as saying what she intends to do — that is, take a drug overdose, carefully measured to ensure death — does not make her suicidal. Excuse me, what? Intentionally killing one’s self is the very definition of suicide, and desiring to take that act would make one, again, definitionally suicidal.

Instead, I suspect, C & C would like us (and legislators, especially) to look upon Maynard’s plan as “death with dignity.” This relatively newly coined term has a more ambiguous definition than “suicide,” a definition that C & C surely hopes to shape, free of the ethical considerations — er, baggage — suicide brings. I’d call that the very definition of deceptive.

Merging Emerging?

In his latest INforefront blog, Chris Cotterill, proposes decimating the number of State agencies. He suggests several mergers as a starting point, one of which would entail combining the Family and Social Services Administration, Governor’s Council for People with Disabilities, and Indiana Protection and Advocacy Services. Bad idea:

Chris, ordinarily I am in favor of the recommendations that you share on the blog. Today we disagree, at least in part. Merging the GCPD and IPAS into FSSA would be a bad move for people with disabilities.

 

First, their constituencies are different. GCPD and IPAS are tasked (federally) with serving people with disabilities (and, arguably, their families). In contrast, FSSA serves a broader service group, and must carefully contend with taxpayers at large and provider agencies. These latter two groups have interests that may directly conflict with those of the disability community.

 

This creates logistical issues. IPAS has the power to sue FSSA, but a agencies don’t sue themselves. Is everyone subservient to the FSSA Secretary? Do GCPD Members still have authority to appoint staff?

 

Finally, who is left to be the watchdog?

Cotterill did respond, acknowledging my concerns and raising a few of his own. Part of his response was inaccurate — GCPD has actually existed in one incarnation or another for decades — while another was astute. Without improved coordination between the three bodies, people with disabilities aren’t being served as fully as possible.

Anyway, the Cotterills are good people who have served the disability community. Chris’ mother began Indiana’s Ms. Wheelchair Indiana Pageant in 2009, is a long-time supporter of the Rehabilitation Hospital of Indiana, and Editor of People on Wheels. But if merger is entertained, I hope people with disabilities are included in the discussion.

What’s in a Name? Families of SMA Becomes Cure SMA

On August 25th, Kenneth Hobby and Rich Rubenstein, President and Chairman, respectively, of Families of SMA, announced that the organization would henceforth be known as Cure SMA. They emphasized that, while the Mission remains unchanged, the new name will serve as a “rallying cry” for a broader audience. Since the announcement, there has been some crying — a crying out by those adults with SMA who take personal offense to the change.

Before the disability rights movement, people with disabilities were looked on as broken beings, in need of medical intervention, desperate for a cure. They were abnormal under this paradigm, known as the medical model. With the disability rights movement came the social model of disability. From this perspective, disabilities are a part of human variation, and their limiting effects are largely due to society’s failure to accommodate. Society is responsible for problems accompanying disability — not the disability, and most certainly not the person with the disability.

The social model, combined with increasing empowerment amongst members of the disability community, has led to many people with disabilities claiming that if a cure were offered, they would not take it. This view is especially common among people with genetic disabilities who have known nothing else, such as those with SMA. For them, their entire lives have been shaped by disability, and to eradicate such a contributing factor in their personhood would eliminate them.

Even if a cure were accepted, many adults have weakened to the point that cure is unfeasible. Rather than clinical trials, they need durable medical equipment, personal care services, and decent transportation. If money is directed to research rather than supports for these “lost causes,” they cannot expect a decent quality of life. And, critically, this leads others to believe these disabled lives are worth less. For the foregoing reasons, many adults with SMA take issue with the Cure SMA name.

Other adults with SMA stand (or, perhaps more accurately, sit) by the decision. Cure SMA Board Member Melissa Milinovich writes on her Facebook page:

When this idea first came to the board, I will admit, I had to do some thinking on it. I wasn’t sure how I felt about the word ‘cure’ so I had to do some soul searching. What I realized is this, everyone in the community, whether they want to admit it or not, wants a cure. That being said, it’s perfectly fine to have differing meanings of what a cure means to every individual. For example, a cure for me does not mean I’ll get up and walk; it means the progression will stop and it’s no longer something I have to worry about. I’m okay and have accepted that. On the other hand, to a newborn baby, a cure would mean that he or she would never even know what life with SMA is. I’m okay with that too!

Yet the fact remains that “cure” does have a definitive meaning in the English language. Stopping SMA’s progression is not within the definition; reversing its effects is.

The name “Families of SMA” emphasized people. It suggested support for the individuals living with the disability, whether directly or through affiliation. “Cure SMA” does suggest action, but it also transfers focus from people to the disability. Personally, I think that’s a mistake. But I would put forth that the greater mistake is Cure SMA’s failure to hear so many of its moral owners. If this “deafness” can be “cured,” I urge the organization to start there.

2014 Access and Inclusion Awards

I have been on a blogging hiatus, but I would be remiss if I completely failed to mention the winners of this year’s Access and Inclusion Awards. On July 31st, Mayor Ballard and his Advisory Council on Disability met at the Arts Garden to recognize:

  • The staff of the Indianapolis International Airport, winner of the Accessibility Award. In her presentation of the award, Emily Munson humorously explained that the Airport deserves to be commended for well-trained staff who aide disabled passengers with competence and respect. Perhaps upon learning this, less Hoosier travelers with disabilities will limit themselves to road trips?
  • Eskenazi Health, winner of the Employer Award. Eskenazi has recently begun a paid internship program for students with disabilities. Several current interns spoke, sharing that they were inspired by coworkers and enjoyed having some jingle in their pocket.
  • The Department of Public Works’ Solid Waste Team, winner of the Exceptional City Service Award. Did you know that disabled and elderly City-dwellers that cannot bring trash to the curb for pick-up can arrange for assistance from the Solid Waste Team? In rain, snow, and sleet, these guys are still on the job, giving extra help to thousands! Exceptional? I think so!
  • Melody Cooper, winner of the James Pauley Lifetime Service Award. John Dickerson of The Arc heaped praises upon Cooper and her tireless work on behalf of those with intellectual and developmental disabilities. He emphasized her service as President of Self Advocates of Indiana.

Congratulations, all!

Dead Meat in the Street

Last week, one of Indy’s top news stories was that a wheelchair user was struck and killed by a car. Numerous posts on my Facebook feed contained a gory photo of an empty wheelchair, on its side, in the middle of the road.

I was annoyed that the victim wasn’t mentioned by name or gender in initial reports. Sure, I understand that a victim’s family must rightfully be notified before the public. But to take away any identifying characteristics strips away her humanity. Yet the media did not wait for more information; instead, we saw a pool of blood under some mangled metal. If the media can’t get inspiration porn out of someone with a disability, I guess it’s happy to settle for a torture porn still.

Fortunately, I didn’t read any comments from trolls arguing that the woman was in the wrong. Some people were genuinely saddened at the loss, and suggested devoting more funding to improving sidewalks. I suppose the sidewalks to the bus stop could be paved with good intentions.

No wheelchair user I know believes sidewalks are Indy’s biggest transportation barrier. Nor will an expanded bus system do much to improve city access. We need legitimate mass transit, a light rail system. I can’t help but wonder if having such an option would have led to one less fatality statistic.