Hear Kavanaugh Out or Get Out

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I am exceedingly disappointed in disability community leaders. They are engaging in what Senator Ben Sasse recently referred to as “theatrics.” While theatrics may, admittedly, serve a purpose in some advocacy pursuits, the theatrics prompting interruptions of Brett Kavanaugh’s hearings are meritless. Beyond that, they reveal a fundamental misunderstanding about the role of the Supreme Court. I’m embarrassed that disability community leaders have hijacked the Kavanaugh hearings to reveal, at best, ignorance, and at worst, manipulation by Democratic Party operatives.

Yesterday I was having a conversation with two friends who also advocate within the disability community. One friend shared that she had written letters oppositing Kavanaugh’s nomination. I asked why she disagreed with Kavanaugh’s pending appointment to the Supreme Court, and she was surprised I did not know that he is “against” people with disabilities. How so, I asked. My friend said that he had made statements revealing his bias against people with disabilities. Yet, when I asked for further details, she could not seem to remember the words he used. Round and round we went, but my friend either could not or would not specifically identify what actions Kavanagh had taken that offended her so deeply.

My other friend jumped in, telling me Kavanagh forced two women with disabilities to have abortions against their will. I said I found that highly unlikely, as Judge Kavanaugh is a self-identified Catholic. I suggested, instead, that he had upheld a surrogate decision-making policy in the Doe Tarlow v. D.C. decision. Surrogate decision-making policies were at issue because the women had been deemed unable to give consent. Importantly, this decision tells us nothing about Judge Kavanaugh’s personal thoughts about people with disabilities. Instead, the decision reveals only that the surrogate decision-making  policies at issue in the decision were constitutional and appropriately applied.

Now, I’m not saying that I agree with the underlying policy Kavanaugh upheld. And we don’t know whether Kavanaugh did, either. Critically, the role of a judge is to interpret the law – not to determine whether a law is “good” or “bad,” and most certainly not to make it. Indeed, I believe these are the fundamental facts that leaders within the disability community fail to grasp. By coming out so strongly against Kavanaugh, and by insinuating that he is a less-than-honorable man, they look rather foolish.

I am concerned that when the disability community needs to advocate for or against a particular piece of legislation – as it should do – too many bridges will have been burned on the Republican side of the aisle. I’ve never witnessed the disability community come out en force against pro-“choice” judicial nominees who think nothing of a woman engaging in her right to selectively abort a fetus on the basis of its disability. Similarly, I’ve not seen disability community leaders interrupt hearings of judicial nominees that support creating a judicially-recognized right to physician-assisted suicide. So why all the fuss about a Supreme Court candidate nominated by a Republican president?

Even worse, I am concerned that the disability rights movement will have lost some of its credibility, demonstrating its fundamental misunderstanding of balance of power between the executive, legislative, and judicial branches of government. Simply, the judiciary does not create law. People with disabilities would be better-served if more attention spent getting focusing on the legislative branch and its ability to create law – that is where the community can have real, lasting influence in improving conditions for all people with disabilities.

Second Disability History Webinar

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You might be wondering why I failed to write about the second edition of the Southeast ADA Center‘s The History of Disabilities webinar series, which was slated for January 25, 2018. (My thoughts about the first webinar can be found here.) I tried to sign in for 20 minutes before I gave up; I don’t know why I can’t get along with Blackboard. Fortunately, the transcript is available online. (A recording of the webinar is also available, but the audio was awful.)

Having left the Civil War behind, Dr. Larry Logue describes the progressive era in the second edition. He notes that although progressives did not necessarily agree on the cause of America’s problems, they did agree on the need for evidence-based solutions run by the government. They proposed two options to resolve the problem of disability: prevention and rehabilitation.

Prevention, as many disability historians will recall, was ugly. The early 1900s saw the rise of eugenics. I’m sad to say the first eugenics statute was implemented in my home state, Indiana. Generally, these statutes allowed for the sterilization of individuals with disabilities, and especially those with intellectual disabilities. According to Dr. Logue, more than half of American states also forbade individuals with disabilities from marrying. Immigrants with disabilities were turned away at Ellis Island and other points of entry. Another element of prevention, Dr. Logue notes, was assimilation. The early 1900s included the push for oralism, led by Alexander Graham Bell. Deaf students were forbidden from learning in sign language, and were forced to lip read and attempt speech. Deaf identity was suppressed until the 1970s. Interestingly, many eugenics statutes remained on the books until the 1970s, as well.

Rehabilitation was an option for individuals who could be put to work and take their place in an organic society. Again, America saw soldiers returning from World War I and recognized that the burden of disability should not necessarily be borne by those soldiers who fought for the public good. As such, some people with disabilities were placed in unskilled jobs for industrial partners. Soldiers who could verify their disabilities also received a pension. Dr. Logue refers to the situation as “the individual/medical model with government funding.”

In sum, I enjoy the way Dr. Logue puts together his presentations and assembles different historical components of each era. But I really hate the delivery method. Southeast ADA Center, please fix it!

Waiting Room Etiquette from the Disability Perspective

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I’m trying to get Spinraza, the first-ever treatment for SMA. (If that occurs, this blog will probably share further details.) Anyway, for the neurologist to submit the treatment request to my insurance company, I had to get examined by a physical therapist. I was in the waiting room for about 15 minutes, and was driven absolutely nuts by a man on the far side of the waiting room who was video chatting with, first, his grandchildren and, second, his wife. Most socially-conscious people know that this kind of behavior is obnoxious. Then I got to thinking about waiting room and lobby etiquette from a disability prospective. This post summarizes my thoughts on the subject.

For owners and designers of waiting rooms and lobbies:

  • Do not line all of the walls with chairs; leave sufficient space for wheelchairs to park in the row with everyone else who is seated. I hate going into a waiting room and seeing every single space against the wall lined with chairs. Sometimes the chairs are even strategically spaced (i.e., extra-wide chairs perfectly interspersed with standard-sized chairs) so that no portion of the wall is left uncovered. Where is a wheelchair user to sit? In the middle of the room? No! They will sit in front of the chairs, parallel parked, and wind up blocking access to three standard-sized chairs. That’s awkward; give them better access.
  • Have a variety of seating options. In addition to offering standard-sized chairs, why not purchase a range of seating options? When I am at the doctor’s office, I regularly see people making use of the extra-wide and, even more so, extra-tall chairs. These can be used by people with broken bones, so as not to put extra pressure on the site of injury. The extra-tall chairs don’t require as much leg and hip flexion, helping patients with broken legs, as well as elderly people who have a difficult time sitting up from a lower chair.
  • Put items for guests at an accessible height or have staff automatically offer to assist guests in retrieving items. It frustrates me when a waiting room offers magazines, but places them on a low coffee table. Similarly, one of my doctor’s offices has a coffee machine and cookies on a low table. Fortunately, staff at the latter inquire as to my interest in the goodies, presenting an opportunity for me to easily ask for assistance. Similarly, if a guest is blind or visually impaired, staff should be instructed to inform him or her of items available while waiting.

For staff serving waiting room and lobby guests:

  • Understand that your clipboard may be insufficient to meet everyone’s needs. Because there aren’t any tables I can access in waiting rooms, I can’t independently fill out paperwork. When I ask for assistance, staff quickly hand me a clipboard. When I explain this accommodation is insufficient, that I actually need someone to physically write my answers, I’ve gotten eye roles. Inappropriate! I understand that you may be extremely busy meeting the needs of other patients, but you could kindly ask that I wait a few minutes. You could ask other personnel to provide assistance. Your office could have mailed me the paperwork before I came for my appointment. But, it’s on you to figure it out, as such assistance is a reasonable accommodation under the Americans with Disabilities Act.
  • Move chairs if it looks like someone in a wheelchair is struggling or uncomfortable. I remember interviewing for some jobs at State agencies with really tiny lobbies. I would be the only person waiting, and there would be five or six chairs crammed inside. Once there wasn’t enough room for me to even sit in the lobby, and the secretary told me she would call for me while I waited outside. Awkward… And what a great way to build my confidence going into a job interview! On another interview, the secretary sheepishly remarked on how there really wasn’t room for wheelchairs in the waiting room, but never offered to remove a couple of chairs so I didn’t have to sit in a manner that blocked the access route for anyone going in or out of the office.
  • Don’t assume guests or patients are being jerks. I was waiting for an administrative hearing with a colleague, and the secretary began to bark at my colleague for not filling out the guest log on her desk. My colleague is blind; she didn’t even know the log existed! I didn’t know it existed, either, because the desktop was higher than my head. If you have expectations of guests, explain them politely when they enter the office.
  • Don’t violate HIPAA because someone needs an accommodation. Sometimes a guest or patient will need paperwork read aloud. This could be due to blindness, and intellectual disability, etc. If reading assistance is requested, don’t read their medical information aloud to a filled waiting room. Invite the patient into a private area and complete their request.

For people with disabilities using lobbies and waiting rooms:

  • Don’t take up more space than you need to use. It drives me nuts when I see a fellow wheelchair user sitting parallel to a row of chairs, taking up three seats when there is room to sit elsewhere. Just because you a wheelchair doesn’t mean you can do whatever you want.
  • Don’t try to cut the line because you are disabled. Again, sometimes people with disabilities feel entitled to be accommodated to however they wish. Many times I’ve witnessed people with disabilities and their attendants cutting in front of others in a waiting room line. Everyone has an appointment for a reason, and yours is not more important merely because you have a visible disability. Take your place in the line like everyone else.

For fellow waiting room and lobby guests:

  • Pay attention to the seating arrangement before plopping down. Often, the best place for someone in a wheelchair to sit is at the end of a row of chairs. His or her attendant will sit in the chair next to them. However, the end-of-row seats seem to be the most frequently occupied by non-disabled people. When all of these end-of-row seats are taken, the wheelchair user may have nowhere to sit in a busy waiting room.
  • Don’t sit by me. Many people in wheelchairs are immunocompromised, and cannot keep their body healthy by doing regular exercise. If you are in the office to be treated for a contagious illness, please stay away!

When Who Attacks?!

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My sister and I were terribly bored yesterday, and wanted to find something to watch while bujoing. Because I can’t remember my Amazon password, finishing our The Americans binge was not an option. We were left with Netflix, and ultimately decided on A & E: When Patients Attack. The single episode of the show is billed as a documentary showcasing the tough work of private security at Queen Elizabeth Hospital.

In short, my sister and I were horrified. The first patient Security is called upon to deal with is an ambulatory patient who needs to go to the restroom, but refuses to use the bedpan provided by the hospital. In what appears to be a matter of minutes (although one can never really tell, given editing), the man is on the floor, pinned down by guards until police come. Seriously?! Why wouldn’t anyone permit this poor man to piss in a manner he found more conducive to the need – let alone give him any options? And why did hospital staff call on Security, who immediately escalated the situation?

Then we see a series of individuals seeking entrance to the hospital, but whose prior complaints and frequent-flyer status lead Security to believe no treatment is needed. Instead, these individuals are hanging out at the hospital because they are homeless and have nothing better to do. I could not understand why the first individual, Dean, was never offered some kind of volunteer position at the hospital. He clearly enjoyed being there and had no intention of leaving; why not give him a purpose and a sense of productivity while he is there? Queen Elizabeth Hospital went so far as to forbid one frequent-flyer, Frank, from returning for one year. In the updates at the end of the documentary, a caption revealed Frank died months after being banned. Do hospital staff still claim that he was not in need of treatment?

The final case that bugged my sister and I was a drunk woman with foot pain. Based on interviews from involved parties, it was easy to deduce that a nurse had done a brief interview with the patient. Because the patient was noisy and began to complain about wait times, Security was called to kick the patient out. The patient complained that no one had actually examined her foot, but staff claimed the examination was completed during the course of the interview. Really? No need for x-rays? No need to even take off the patient’s shoe and look at her foot? This vignette really illustrated the “merits” of socialized medicine!

If I were the attorney for Queen Elizabeth Hospital, I would never agree to the release of this documentary! And if I were a member of the staff, I would be absolutely mortified and ashamed!

Review: Far from the Tree

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Before reading Andrew Solomon‘s Far from the Tree, I had read one of his prior books, The Noonday Demon. While I enjoyed the latter, a long work about depression, Far from the Tree was, frankly, beyond disappointing. As a person with a severe physical disability, I found it insulting.

As the title suggests, in Far from the Tree Solomon explores the relationship between children and parents when those children have a horizontal identity. In other words, Solomon looks at families in which a child has a disability or some other identity which its parents do not share. Specifically, Solomon looks at parents affected by deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, prodigy, rape, and crime. He lauds himself for interviewing “more than three hundred families for [the] book, some briefly and some in depth, producing nearly forty thousand pages of interview transcripts.”

Interestingly – and frustratingly – Solomon appears much more interested in speaking with parents than with the children, themselves. This is especially clear when it comes to disabled subjects. Despite his attempts to appear neutral and present multiple perspectives, Solomon’s true feelings of disdain are apparent:

Disability activists often referred to Ashley’s loss of dignity, but having seen a number of similarly disabled people lifted up in pulleys with chains to be removed from bed, put in metal standers to preserve muscle tone, conveyed on rope systems into showers, I cannot see much dignity there. (Solomon at 389.)

This statement produced a visceral reaction from this reader. First, for those who don’t know about Ashley, do a quick Google search on “the Ashley treatment” and “the pillow angel.” Ashley’s parents were worried they would not be able to care for her if she grew into an adult, and asked physicians to perform a total hysterectomy on her, remove her breast buds, and provide hormonal therapy to keep her small. This kind of rights violation would be absolutely unthinkable if Ashley was not disabled.

That Solomon thinks the mutilation of a child preserves dignity while use a Hoyer lift does not is inconceivable. Perhaps that’s because I use a lift myself when toileting and showering. I’m a lawyer. I’m a taxpayer. I’m a friend. I consider myself pretty darn dignified.

Don’t read this book. Find something more interesting. Something that actually considers the disability perspective.

First Disability History Webinar

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Today marked the beginning of the History of Disabilities Webinar Series, hosted by the Southeast ADA Center and the Burton Blatt Institute. The first of four lessons, “The Tangled Roots of Disability Policy,” was taught by Dr. Larry Logue . Dr. Logue is a former Professor of History at Mississippi College and is currently a Senior Fellow at the Burton Blatt Institute.

The lecture began with a description of change the 19th Century. There was the Second Great Awakening, emphasis on prisoners completing work-based reform, and a drop in the US birthrate. Dr. Logue noted that each of these happenings involved emphasis on personal responsibility. One is responsible for his or her salvation, discipline, and family planning. Interestingly, it is at the same time that the “medical model” of disability emerges.

Yet, Dr. Logue asked participants to question, is the medical model really all that medical? After all, soldiers returning from the Civil War did not have good options for rehabilitation. Many opted for a cash payout rather than a government prosthetic. Or a returning vets completely outside the disability model system, in that their disabilities were caused by the public’s decision to go to war rather than a personal choice?

The Series’ material was interesting, but too short. Dr. Logue only spoke for about 25 minutes, leaving time for ample questions from the audience. Most questions were thought-provoking, but could not be answered because either: (1) the material is reserved for a future lesson in the Series or (2) no one has researched the issue yet. Maybe the Southeast ADA Center or the Burton Blatt Institute would like to offer research grants to interested parties? (Hint, hint…)

Review: The New Jim Crow

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It’s been a while since I’ve posted a book review, not because I haven’t been reading, but because what I have been reading hasn’t been conducive to a blog. Fortunately, the book I finished last night, Michelle Alexander‘s The New Jim Crow: Mass Incarceration in the Age of Colorblindness is certainly worth discussion.

I had seen the book on the New York Times‘ bestseller list for quite some time, but wasn’t interested in listening to someone bemoan the plight of the criminal. After all, don’t criminals get themselves into predicaments by the very nature of their criminal activity? Certainly not blameless victims, right? Alexander contended with these critiques directly, noting that while criminal activity should be met with consequences and ownership, African Americans are the one to suffer for criminal activity far more than white counterparts. She makes her argument extensive data and logic. I was, frankly, blown away by the information revealed in Alexander’s book.

The statistic that shocked me the most? “The mass incarceration of people of color is a big part of the reason that a black child born today is less likely to be raised by both parents than a black child born during slavery.” Think about that for a while!

Alexander traces mass incarceration to the War on Drugs launched by the Reagan Administration in the 1980s. The Clinton Administration worsened the situation by taking numerous actions to improve that he was tough on crime. She writes that “[i]n less than thirty years, the U.S. penal population exploded from around 300,000 to more than 2 million, with drug convictions accounting for the majority of the increase.” If those trends continue, [o]ne in three young African American men will serve time in prison….” Is this because African Americans use drugs – or sell them – at a greater rate than other groups? Remarkably, no!

The remainder of the book traces reasons African Americans have been disproportionately affected by the War on Drugs, including the federal government incentivizing state and local police for making drug arrests, extreme prosecutorial discretion, and the inability of those being released from prisons and jails to reintegrate into the community. Helpfully, in addition to discussing major systemic issues, such as those previously mentioned, Alexander also drills down into the statistics of particular locales. For example, although indigent criminal defendants have a right to be represented by counsel, 11,000 people go to court without it every year in Wisconsin because indigency is defined as earning less than $3,000 per year.

If you’re interested in reading a remarkable book over Christmas break, I highly recommend checking this one out!

 

The Affordable Housing Crisis: 2016 Stats

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Almost everyone agrees there is an affordable housing crisis across the United States. Late last week, the Technical Assistance Collaborative (TAC) released a new report, Priced Out: The Housing Crisis for People with Disabilities. The accompanying website provides a searchable index regarding the lack of affordable housing in your metropolitan area.

Of course, I searched Indiana, the state in which I reside. TAC reveals that over 90,000 people in Indiana rely on Supplemental Security Income (SSI) as their sole source of income. In 2016, that was a mere $733 each. However, the average one-bedroom apartment in Indiana costs $620 per month. That leaves SSI recipients with only 15% of their income for other necessities, including food and transportation. In my metropolitan area, Indianapolis-Carmel, the results are even more troubling. A one-bedroom apartment would cost a recipient of SSI a whopping 94% of their monthly income.

Clearly, the housing situation is untenable for SSI recipients without in-kind support from family and friends. The report even posits that the lack of affordable housing may be part of the reason why some may people with disabilities live in institutional settings. Ironically, these settings, such as nursing homes, are far more expensive to taxpayers, at a rate of over $500 per day.

2017 Conference on Disability

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Earlier this week, I attended the 2017 Conference on Disability, sponsored by the Indiana Governor’s Council on People with Disabilities. (Disclaimer: I am a board member.) It was a great time, as usual.

The Sunday before the Conference began, the Indiana Statewide Independent Living Council (INSILC) conducted a town hall meeting. A moderator was brought in to  explain to Hoosiers the basics of centers for independent living, and then hear from the crowd how the centers and INSILC can better serve their constituencies. Common comment themes included frustration that the centers have not engaged more fully in public policy, concern that not many people know about the services offered by their local center, and hope that all of Indiana’s 92 counties may one day be served by a center. INSILC staff listened intently throughout the forum, and were thoughtful in assuring that those who were interested could participate in the event. My only objection is that participants were expected to raise their hand if they wished to make a comment – a task that’s not easy when your muscles don’t work. Nevertheless, it is evident that INSILC has vastly improved from previous years and I look forward to seeing how forum comments are used to further promote the organization and its independent living mission.

Monday’s breakfast keynote speaker was Senator Tom Harkin. The beginning of his speech focused on anecdotes about his Deaf brother and an entrepreneur with intellectual disabilities from Independence, Iowa. In essence, he was preaching to the choir about the ingenuity and dedication that people with disabilities bring to the business sector. Harkin shared that while many Titles of the Americans with Disabilities Act (ADA) have dramatically increased opportunities for people with disabilities, Title I, which addresses employment, has not had the same effect. Employment for people with disabilities is about the same as it was in 1990, the year the ADA was passed. in his retirement, Harkin has decided to work on this issue and recently held the second Harkin Summit on Global Disability Employment. I’m very interested in what he learned at the Summit, but this was not discussed.

Next up was my workshop, Changing the Agency Paradigm: Promoting Choice Through Consumer-Directed Care. I wasn’t expecting a large turnout; not many people in Indiana have taken advantage of the paltry consumer-directed options currently available. However, my room was packed! Attendees were very receptive to my message, and seemed eager to work on advocating for more consumer-directed options. As one attendee pointed out, though, providers need to be part of this conversation rather than sticking their heads in the sand or actively objecting to policy changes. Those providers were nowhere to be found. The session, and the interest of its participants, really got me revved up and excited to continue advocating for the expansion of consumer-directed care options through Indiana Medicaid.

24312795_10213405462764569_6790251941549572215_n.jpg
 Emily Munson presents a PowerPoint presentation from behind a podium with the assistance of Shannon Clark. Photo credit: Shannon Clark.

An independent living panel, consisting of people with a wide variety of disabilities, convened after lunch. Afterward, I attended a workshop by Diana Braun. She showed the film Body & Soul: Diana & Kathy, and then discussed what she has been doing since Kathy’s death. Then I spoke with some of the exhibitors, including the folks at the INDATA Project. The assistive technology available today is truly incredible, including a vibrating GPS system you can put inside your shoes and glasses that can help colorblind people better differentiate color.

Tuesday morning began with a keynote from Dr. Sue Gant. She spoke about what happened at Henry’s Turkey Farm, detailing horror after horror. I went to her workshop about detecting abuse and neglect afterward, although participants hijacked the session by asking specific questions before Dr. Gant even had the opportunity to begin. Disturbingly, one professional in the audience didn’t realize she was a mandatory reporter, nor did she have any idea to whom she is obligated to report abuse, neglect, and exploitation.

Lydia X. Z. Brown brought the energy to their afternoon keynote, Claiming Disability in Resistance: Exploring Disability Justice, Struggle, and Healing. After their speech, I got to purchase a copy of All the Weight of Our Dreams: On Living Radicalized Autism. While they were signing my book, I also got to ask Lydia about her experiences at Georgetown.

My final sessions of the day contemplated community organizing as an advocacy tool and website access. I also got to visit the AbleGamers and play a video game with only my eyes! It was amazing!