Crip Life

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!

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…)

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.

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 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!

HR 620: The ADA Nullification Act

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Today has been, overall, disappointing. I got an adverse (and ridiculous boilerplate) agency review decision regarding my eligibility for Vocational Rehabilitation Services. I also learned that eight nursing home residents died after power outages caused by Hurricane Irma. But, I want to write about the issue that may have the greatest and longest-lasting ramifications: HR 620.

It’s sponsor, Ted Poe (a Texas Republican), euphemistically titled the bill the ADA Education and Reform Act of 2017. It should truly be called the ADA Title III Nullification Act of Hopefully Never. Currently, the only way ADA noncompliance is rectified is if a person that has a disability pursues action against the discriminatory party. If, for example, a new store is built with zero means of access for someone in a wheelchair (i.e., the only means of entry is staircases), no one is going to make the store owner comply with the ADA except people with disabilities. They could try to speak to the owner and explain that he or she is out of compliance. Or the person with a disability could file a complaint with a local human rights commission or the US Department of Justice. No government agency is out inspecting and ensuring accessibility. Complete onus is on the person with a disability.  Based on this noncompliance (note that businesses have been aware of the ADA for 27 years and have had more than two decades to learn the rules and comply) and the effects of discrimination, as well as potential out-of-pocket fees spent on court filing and attorney fees, people with disabilities can potentially recover limited damages under the ADA.

Businesses and their buddies, like Representative Poe, are upset that ADA compliance is mandatory and, potentially, costly. It is business that has petitioned for HR 620. The bill, if passed, will be detrimental to civil rights and people with disabilities. Why? If a person with a disability discovers an architectural barrier, he or she will no longer be able to file a lawsuit unless: (1) he or she provides specific notice to the owner of the noncompliant entity regarding the barrier; (2) the owner fails to, within 60 days, provide a description of the changes it will make to become compliant or fails to, within 120 days, make substantial progress on the barrier removal. This is absolutely ridiculous.

The ADA has existed for 27 years; businesses have had ample time to comply. Now, any incentive to do so proactively is gone. New businesses will likely wait until they receive a complaint to make their buildings and services accessible. And, people with disabilities may be less likely to complain. Having to manage attendant care, paratransit, and a regular job can be exhausting, and few will have time to regularly follow up with the business and ensure is making reasonable progress toward compliance. It is much easier to ask an attorney to handle the letter-writing and maintenance aspects of the proposed amendments. Yet, with or without attorney, HR 620 would require a person who has been blatantly discriminated against to wait half a year before they can enforce their rights.

Businesses frequently state that they are frustrated with “drive-by lawsuits,” in which attorneys will search Google maps, look for businesses with noncompliant parking lots, find a local person with a disability to name in the suit, and file. The business may offer to settle, not wanting to engage in costly litigation, and the litigant and lawyer may make off with $2,500 each for minimal work and, allegedly, minimal harm caused by the business’ noncompliance.

This argument is completely bogus. I live in Indiana. We have no problem with ADA drive-by lawsuits. California and Florida may have a problem, but remedies already exist. Rule 11 of the Federal Rules of Civil Procedure prohibits attorneys from filing frivolous lawsuits or harassing the adversarial party. Attorneys are sanctioned if they violate Rule 11, and all law school students learn this in their 1L Civil Procedure class. DREDF also notes that attorneys and Bar Associations have ethical obligations that prohibit inappropriate behavior by attorneys. California sanctioned one attorney regarding his unethical disability litigation methods.

From an ethical perspective, I’m truly disturbed that Representative Poe apparently has no qualms about putting forth a bill specifically designed to diminish the rights of people with disabilities. And I’m even more upset that the bill has 51 cosponsors. Members of both parties have cosponsored it. Are disability rights still a bipartisan issue? Perhaps. However,  I would be remiss if I failed to share that the bill was passed out of the Judiciary Committee along party lines. All 15 Republicans voted in favor of the bill, and all nine Democrats voted against it.

If you are even half as concerned as I am about HR 620, please contact your representative and ask him or her to oppose the bill. Share with them how it diminishes civil rights and encourages noncompliance. Share that, in addition to the arguments given above, the bill is simply immoral. Share that disability rights matter.

Free Our People Film Festival

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I got home slightly before midnight, went to work in this morning, and saw the doctor this afternoon. So, you can expect me to be pretty tired. Nonetheless, I have to share how much fun it was participating in the Center for Disability Rights‘ Free Our People Film Festival in Rochester, New York on Tuesday!

In March, my sister, Ginny, and I wrote and produced a seven-minute film, (Crip)perelli Life 2: Home Is Where The Hat Is. The film is a sequel to (Crip)perelli Life, a story about a highschooler with spinal muscular atrophy that joins a Mafia family with similarly disabled people. In the sequel, the highschooler’s service dog racing ring gets busted by the cops, and, without a transition plan in place, he gets stuck living in a nursing home. Members of the Cripperelli family have to bust him out.

Although the movie is satirical, it tackles the important and oft-ignored subject of institutionalization.  In fact, it’s estimated that more than 200,000 non-elderly people currently reside in nursing homes. The Center for Disability Rights sought to bring attention to this topic by sponsoring the Film Festival. Ginny and I came in second place, and had the pleasure of attending the Film Festival in person.

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Ginny introducing our production

In addition to watching the winning and third-place videos, the Center for Disability Rights showed a couple of other videos highlighting the terrible consequences of institutionalization. A filmmaker panel concluded the evening, as members of the audience got to ask questions about the films and other disability advocacy projects.

I was privileged to participate in the Film Festival, and encourage anyone reading this blog to check out each of the short films. You will laugh and definitely learn something.  Center for Disability Rights CEO Bruce Darling also committed to promoting a similar Film Festival next year, so keep visiting the website throughout the year if you want more information on how you can participate!

Banishing Bumpiness

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Are you a wheelchair user? Do you experience back or neck pain? If so, you’re not alone. Today I listened to a Great Lakes ADA Center webinar on Surface Roughness and Rollability. I was surprised to learn that wheelchair users are twice as likely as the general population to suffer back and neck pain. In fact, 60% of wheelchair users report such soreness. Some of this discomfort may be attributed to vibrations caused by rolling over uneven pathways.

Uneven pathways are bad all around. Presenter Jon Pearlman shared that $30 billion is annually spent on medical costs associated with falls. The elderly population is especially susceptible to tripping. Falls also are the most common cause of traumatic brain injuries. If wheelchairs – and especially scooters – go over particularly uneven pathways, people sitting in them may fall out. Bad, bad, bad!

Dr. Pearlman and his team discovered that, regardless of the wheelchair brand/model, vibrations measured in wheelchair seats that are driven over pathways fall either within or above the vibration caution zone delineated by OSHA. So how do we minimize this danger?

Unfortunately, DME companies have not worked to resolve the problem. Studies reveal that wheelchair cushions actually amplify vibrations into the spinal column of the wheelchair user. Suspension systems are not sufficient, either. However, to create an adequate suspension system for the level of vibration typically experienced by a wheelchair user, the wheelchair would likely become unwieldy.

The solution, then, appears to lie in the proper design of pathways themselves. Surprisingly, Dr. Pearlman reports that some paving stones create smoother pathways than poured concrete. The pattern and bevel of the paver stones are determinative of the vibrations wheelchair users will experience. Municipalities, which are typically responsible for creating pedestrian paths, should take heed of Dr. Pearlman’s data when planning new projects.

Interestingly, the US Access Board funded a portion of Dr. Pearlman’s research. My hope, as a cobblestone-hating wheelchair user, is that the Access Board will develop standards requiring minimum smoothness.

Access and Inclusion Awards

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Last Tuesday, I attended the annual Mayor’s Advisory Council on Disability‘s Access and Inclusion Awards. (As for this post, better late than never, right?) This ceremony did not occur last year because the Mayor’s Office was considering merging these awards with other diversity award ceremonies. But, thanks to relentless advocacy from Councilmember Paula Haskin, Mayor Hogsett agreed to a 2017 program.

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The ceremony began with a few words from the Mayor. His speech was geared toward empowerment and appreciation for the 27 years of continuing advocacy people with disabilities have made. His referring to a person in a wheelchair as “wheelchair-bound” was a minor blunder. For those who are unaware, “wheelchair-bound” is a disfavored phrase by many who use wheelchairs. We see wheelchairs not as something we are stuck in, but rather as tools of freedom. It was a teachable moment.

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Awards were received by the following individuals:

  • Scott Wise, owner of Scotty’s Brewhouse, won the award for being an employer offering opportunities to people with disabilities.
  • Indy Pride won for being a community organization going above and beyond to include individuals with disabilities in its programming.
  • Wade Wingler, of Easter Seals Crossroads, won the lifetime achievement award in honor of a life of service to individuals with disabilities.