Free Our People Film Festival

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 RightsFree 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

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

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.

Disability Rights March

Today I attended a disability rights March in Indianapolis sponsored by the Global Accessibility Project. Those who turned out – on a hot day that threatened thunderstorms – both with and without disabilities, are committed to promoting disability rights. A guy from Iowa even stopped by and joined us for a while, sharing that he stood in solidarity with our frustrations about the lack of inclusion of people with disabilities in the broader social justice landscape.

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Photo credit: Global Accessibility Project

As we marched around Indiana’s Statehouse and Government Center, numerous accessibility fails were witnessed:

  • Our permit was for gathering on the south lawn of the Statehouse. It’s impossible to get there without climbing stairs.
  • To enter the Statehouse, those who cannot climb stairs are required to enter in the back, via the basement.
  • Accessible parking is nowhere near the accessible entrances of either building.
  • Flower planters are placed about one foot from the edge of the curb where those using accessible parking are required to parallel park. This makes it impossible for those using the parking spaces to deploy ramps or lifts.
  • One ramp was ridiculously steep, clearly outside Access Board requirements.
  • Many ramps were in poor repair, with potholes at the edges.
  • One ramp was completely inaccessible, as construction materials covered it. There was no opportunity to detour, as construction cones were dumped in the possible detour pathway.

Think that’s a lot of problems? We walked less than two blocks! Perhaps some of our frustration can now be understood…

Independent Living, Hoosier Style

I’ve spent the last two days in a training program for the Indiana Statewide Council on Independent Living  Council (INSILC). We had the pleasure of being trained Paula McElwee, our technical assistance coordinator from Independent Living Research Utilization (ILRU), and Kimberly Tissot from able South Carolina. The information conveyed by Paula and Kimberly was well-received by INSILC members and prospective members, myself included.

What I did find concerning, however, was confirmation from individuals across the state that many people – both with and without disabilities – are still unfamiliar the philosophy of independent living. I want to devote this post to spreading the word. Independent living is essential, especially as fears loom about political plans for re-institutionalization.

Independent living is generally considered the brainchild of Ed Roberts. Roberts was paralyzed from polio, and used a respirator and an iron lung for respiratory support. Nonetheless, he knew that he had much to contribute, and applied for services from vocational rehabilitation (VR). VR decided that he was too disabled and turned him away without assistance, effectually deeming him unemployable. Roberts pressed on, undeterred, and was admitted to Berkeley. There, Roberts lived in the campus clinic, as opposed to a dormitory, and his brother provided personal care assistance.

As more students with physical disabilities gained admission to Berkeley and forged friendships with Roberts, their band became known as the Rolling Quads. They demanded more equal treatment from Berkeley, including the removal of environmental barriers and the provision of personal care services. Yes, their goal was to live independently. Although they could not “independently” complete the physical tasks of activities of daily living, their independence came through the direction of how those activities were completed. Independence is about choice.

(By the way, in case you were wondering, after Roberts completed his education, he was appointed by the Governor as VR Director. Mwahahahahaha!)

With prompting from those in the disability community, the federal government began funding what are known as centers for independent living (CILs). Today, the funding scheme is fairly complex, but CILs are tasked with providing core services for people with disabilities in their service areas:

  • Information and referral. Staff can refer clients to local community resources such as transportation, accessible and affordable housing options, sources for durable medical equipment, etc.
  • Advocacy. Staff can help clients learn methods for self-advocacy, such as best practices for asking an employer for reasonable accommodations. Staff may also engage in systems advocacy, informing policymakers about the ways in which proposed legislation may affect people with disabilities.
  • Independent living skills. Staff can provide instruction on things like personal care assistance, accessible transportation options, adaptive sports, etc. Obviously, the skills imparted to clients will depend on each client’s individualized needs.
  • Peer counseling. Since many CIL staff have disabilities themselves, they can provide clients with insights about their own experiences. Learning from an experienced peer can demonstrate that independent living, holding a job, etc., is possible, regardless of what the client has heard elsewhere.
  • Transition. Staff can help clients transitioning from high school to higher education or the workforce. Important tips, such as getting a benefits analysis and exploring Medicaid buy-in options, can be very helpful to those transitioning into adulthood.

Important stuff, no doubt. Although the day-to-day operations of the CILs are largely autonomous, the state independent living council in each state is responsible for drafting a state plan for independent living. This plan, which incorporates feedback from people with disabilities, CILs, and community partners, directs the overall operation of independent living within the state. The drafting and monitoring of this plan are primary responsibilities for councils, including INSILC.

Crucially, INSILC is the only gubernatorially-appointed board in Indiana that contains a majority of people with disabilities as voting members, with a consistent mission of promoting independent living within the state. They are, most certainly, a necessary voice. The past two days’ training sessions were great; it makes me happy to see INSILC’s commitment to continue striving to represent the interests of peers with disabilities.

Chapman University, Media, and Society Fail

Last night I heard a news story about Marty O’Connor and his mother, Judy. After becoming quadriplegic, Marty opted to enter Chapman University‘s MBA program.  When he graduated on May 20, Chapman awarded Judy an honorary degree. Judy apparently attended every class with Marty, helping him take notes and providing other physical assistance as necessary. The story has gone viral, and many of those sharing it indicate that the story makes them feel good. Not me. I’m pissed off.

First, I’m curious why Chapman can award an honorary degree but not reasonable accommodations. Chapman may be a private institution, but I have a hard time believing that it does not accept federal funding of any kind, including federal student loans to pay tuition.  Under the Rehabilitation Act, Chapman would be responsible for accommodating students with disabilities. One of the simplest accommodations to provide those with limited mobility is note taking services. There should not have been a need for Judy to attend classes with Marty. Even assuming that Chapman could not provide all of the services rendered by Judy – personal care, for example, would not be a reasonable accommodation in most circumstances – Marty should have been served by the California vocational rehabilitation (VR) program. VR is designed to help individuals with disabilities achieve and maintain their employment goals, and can provide a range of services including personal care, transportation, and assistive technology.

The fact that Judy did not leave her son’s side during his MBA program is not something to be celebrated. Would we fawn over an able-bodied student’s mother going to graduate school with him or her? No! We’d probably be disturbed. If that story was covered by the media at all, it would be to discuss millennials’ failure to launch or overbearing mothers; the mother would most certainly not be praised.

My intent not to malign Judy; I have no doubt that she sacrificed a lot in order to help Marty be successful. And I believe that the media covering the story probably have good intentions, and want to commend the selflessness of a loving parent.  But the current system designed to help people with disabilities relies far too heavily on parents to provide for adult children.  In Indiana, for example, parents must be more than 80 years old in order their adult children with developmental disabilities to qualify for emergency placement on a waiver that provides in-home services. More than a decade after retirement age, Indiana still expects parents to provide the majority of care for adults with disabilities. By praising parents like Judy, who willingly make these life sacrifices, I’m afraid that the media perpetuates the myth that these relationships like those of Marty and Judy should be the norm. Yes, mothers should love their children. But when those children become adults, they need to have the opportunity to gain independence and flourish independently.

I told the above to my own mother, discussing the story with her this afternoon. She said that I was one to talk; after all, I rely on her to provide my transportation to and from work every day. Which brings me to my final point – society is still failing people with disabilities. I would gladly hire someone else to drive me to and from work, but I cannot afford it, even as an attorney.  Though VR legally should have paid for my tuition, it refused, and I graduated with $83,000 in student loans, which I am still repaying.  Though I am on Indiana’s Medicaid buy-in program, it pays caregivers so little – less than $10 per hour – that I cannot attract the quality individuals on whom I must rely. My sister, for example, receives personal care assistance through an agency, and that agency has failed to send someone to get her out of bed more than five times in the last month. It seems that people like Judy and my own mom have to step in because the social programs designed to help us are so crappy.

The next time you read a story like that of Marty and Judy, I encourage you to do more than “feel good.” Ask yourself whether everything is as sunny as it appears. And if the answer is “no,” ask what you can do to help change it.

Banking by the Disabled

This afternoon, I listened to a webinar produced by the Real Economic Impact Network regarding trends in banking by people with disabilities. It discussed the National Disability Institute’s (NDI) recent report, Banking Status and Financial Behaviors of Adults with Disabilities. The report was generated based upon the findings of the FDIC’s 2015 national survey.

Although it may not sound scintillating, banking issues have interested me since I finished Lisa Servon’s The Unbanking of America. Unbanking, or not having a bank account and instead using alternative resources to handle money, is not in and of itself a negative. In fact, if one has low income and few assets, refraining from the use of a bank account may be rational. However, not using mainstream banking services also comes with downsides, such as an inability to access lines of credit.

NDI’s report, unsurprisingly, finds that households in which at least one person has a disability are more likely to be unbanked or underbanked.  The exact number – 46% of households affected by disability – was larger than I expected. Moreover, the report determined that the particular type of disability affecting a household does not significantly influence the household’s banking status.

Another interesting section involved the manner in which households engage in financial transactions. While 71% of households without disability made electronic payments from their bank account, only 46% of households with disability did the same. This disparity remains statistically significant whether or not the household with a disability is unbanked or underbanked. To me, a person with a mobility disability, it is much easier to make financial transactions electronically. I expected it would also be easier and safer for individuals with other disabilities, such as visual impairments and intellectual disabilities. In fact, one of the worries discussed on today’s webinar was whether the trend to engage in even more banking online will adversely affect people with disabilities lacking the technology to participate.

The entire report is definitely worth reviewing. In addition to presenting the data, NDI also makes policy suggestions to improve the financial health of people with disabilities. For example, NDI suggests that ABLE accounts could serve as placeholders for those unable to access savings accounts by nature of means testing for public benefits. Check out the report and let me know what you think!