5th Annual Fair Housing Conference Debriefing

Last Thursday, I had the pleasure of attending the Fair Housing Center of Central Indiana‘s (FHCCI) Fifth Annual Fair Housing Conference & Anniversary Celebration at the Marriott East in Indianapolis. In full disclosure, I serve as Secretary of the FHCCI  Board, and helped found the organization. Nonetheless, I think everyone in attendance – and this year we set an all-time registration record – enjoyed the event.

17834357_1366600100044711_889091597661959620_o.jpg
FHCCI Board and Staff

This year’s theme was No Hate in Our Neighborhood: How Fair Housing Laws Combat Hate & Promote Inclusion. (The program’s design credit goes to Projects Coordinator Brady Ripperger.) It highlights both the fact that Indiana is one of only five states without a hate crime law and FHCCI recently received a large grant from the Open Society Foundations to form a coalition combating hatred.

Because of my professional interest, as well as serving as moderator at the first session, both of the breakout workshops I attended addressed fair housing and disability.  At the first session, Indiana Disability Rights’ Managing Attorney Tom Crishon and Relman Dane & Colfax’s Laura Arandes discussed case law/litigation updates from January 2016 to present. The most interesting part of their session, perhaps, came during the question and answer period, when landlords peppered them with questions about the reasonableness of accommodations. At the beginning of the session, Tom joked that perhaps the audience was so crowded due to settlement agreements requiring landlords to get continuing education about fair housing law. By the end of the session, the joke wasn’t so funny as intended.

Indiana Disability Rights was featured in the second disability-related workshop as well, this time by Legal Director Melissa Keyes. Melissa discussed changes required of home and community-based service providers under new rules promulgated by Medicaid. These rules include, for example, that recipients of services are entitled to a lease and a bedroom with a lockable door. Melissa’s co-presenter, Executive Director of HOPE Fair Housing Center Anne Houghtaling, spoke about how people with disabilities are often affected by landlords’ refusal to consider those with criminal records from rental opportunities. Interestingly, she also shared that she is the individual that wrote the original grant for FHCCI startup funding years ago!

The highlight of the conference (aside from getting surprised with a poster in front of the whole audience at lunch, in recognition for five years of service to the organization) was the morning keynote, delivered by Ise Lyfe. I’d heard him speak last summer, at the National Fair Housing Alliance Annual Conference in Washington, D.C. I can’t really explain how awesome his presentations are – they include things like mathematical poetry – and emphasize the importance of the individual, the importance of participation, and of course the importance of our work.

April is Fair Housing Month. If you’re looking for a way to get involved, consider donating to FHCCI, which provides education and enforcement activities regarding fair housing in Central Indiana. Given our commitment to making the conference accessible to those in the community, registration costs do not cover the full expense of the event. Your donation could help further our activities, including the conference.

Review: Planet of the Blind

In honor of Disability Awareness Month, I decided to read a memoir about disability: Stephen Kuusisto‘s Planet of the Blind. It was a great choice, and I give it two thumbs up.

51H9gnSxupL._SX323_BO1,204,203,200_.jpg

As a person with a disability, myself, I’m not a big fan of the disability memoir-genre. Typically, they tend to bemoan lost status (especially those written by authors with spinal cord injuries) or start out from the perspective of wanting to inspire readers. While Kuusisto does expend pages writing of his desire to “pass” in “normal” society, he uses more to show the folly of his attempts. In effect, Planet of the Blind is a story of disability acceptance.

Perhaps what I enjoyed most about Kuusisto’s work is that he is a poet, and his prose is stunning. For example: “My masculinity is fragile, my ego crawls around blindness like a snail exploring a piece of broken glass.” For the most part, readers are free from repeated clichés about overcoming and finding peace; Kuusisto has the vocabulary to invite readers more deeply into his thought processes and emotional responses.

In chart, if you are interested in reading something more than a memoir, consider Planet of the Blind.

EEOC’s New Affirmative Action Rule

Today the Equal Employment Opportunity Commission (EEOC) published its final rule on Affirmative Action for Individuals with Disabilities in Federal Employment. It becomes effective 60 days from publication, and its provisions are applicable beginning January 3, 2018. Indeed, federal employees with disabilities – and federal job seekers with disabilities – have some great things to look forward to!

Most importantly, the rule adds two significant requirements to the administration of the Rehabilitation Act. First, those federal employees with targeted disabilities requiring personal assistance (PA) services for work and work-related travel can receive them from their employing agency as a reasonable accommodation. This is huge! People with significant mobility disabilities may now be able to use the restroom at work, eat lunch, and have someone put their coat on before they leave for the day. Importantly, the EEOC expects federal agencies to even provide PA services outside of the agency’s infrastructure for those individuals telecommuting.

I would feel a bit strange about my employer being involved in my toileting routine. Fortunately, the EEOC specifically notes that when hiring a PA service provider, the agency shall “give primary consideration to the individual’s preferences to the extent permitted by law.” This means, for example, that if a female employee with a targeted disability only feels comfortable with the assistance of another female, the agency must consider this request. I am grateful to those submitting comments to the EEOC regarding the intimacy of the relationship between a PA service provider and the recipient of those services.

Second, the EEOC is requiring federal agencies to take specifically-designated steps toward hiring more people with disabilities, and particularly those with severe disabilities. (It should be noted that the EEOC specifically refrained from using the word “severe,” after a commentor indicated the lack of political correctness. You’ll get no political correctness from this crip; consider my succinctness a reasonable accommodation for exhausted vocal muscles.) Specifically, the final rule mandates that the following steps be taken to increase the hiring advancement of those with disabilities:

  • Programs and resources should be used to identify applicants with disabilities;
  • Contracting with disability organizations, including vocational rehabilitation programs, centers for independent living, and employment networks;
  • Ensured availability of sufficient personnel to answer disability-related questions;
  • Creating a plan of action to ensure that disable employees have opportunities for advancement, including information about training opportunities and/or a mentoring program;
  • Inclusion of disability within the agency’s anti-harassment policy and training materials;
  • Adoption of easy-to-understand and easily-available reasonable accommodation policies and rights to accessible technology;
  • Guarantee that the agency evaluate its entire budget when determining whether a reasonable accommodation would constitute an undue hardship; and
  • Provide applicants or employees with a written notice (in an accessible format) of why a reasonable accommodation was denied, along with instructions on how to file a discrimination complaint and appeal.

How’s that for being a model employer?! Any guesses on when we can expect the private sector to get on board?

Debriefing: Conference on Disability 2016

Earlier this month I had the pleasure of attending the Indiana Governor’s Council for People with Disabilities‘ annual Conference on Disability. As in years past, the conference was a great opportunity to mingle with disability advocates across the state. This year, the Council also took steps to appeal to a larger audience, offering more flexible registration options for professionals (such as attorneys and social workers) and speakers known throughout the nation. This year, the Indiana Statewide Independent Living Council also sponsored an independent living conference track and offered scholarships for people with disabilities.

The night before the actual conference began, I attended the screening of Including Samuel and the discussion with filmmaker (and father of Samuel) Dan Habib. habib_dan_color_pngI tend to think of movie screenings as early-access events; this film is about a decade old, so it felt a little stale. I didn’t learn anything new, and fear that fellow attendees with disabilities related a bit too well with Samuel. Certainly, the film would be helpful to those wanting to learn more about the special education system, including parents of newly diagnosed children and special education teachers. However, I’m not sure I would have ventured out in the December cold to participate in this event had I known what to expect. That being said, Habib was a gracious speaker, and had a special connection with Indiana’s current class of Partners in Policymaking, having participated in the New Hampshire program after Samuel’s diagnosis.

Monday morning’s keynote presentation was given by Jonathan Martinis, an attorney jmartinisperhaps best known for his work in the “Jenny” Hatch case. There, he fought Jenny’s guardian, who was unnecessarily controlling Jenny’s life and limiting her opportunities. Martinis, who now serves as Senior Director for Law and Policy at the Burton Blatt Institute is a proponent of supported decision-making in lieu of guardianships. Supported decision-making enables people with disabilities to pursue self-directed life outcomes and independence, unlike guardianships which constitute the civil death of the ward.

I attended two of Martinis’ Supported Decision-Making from Theory to Practice workshops: Health Care and Life Planning and Special Education and Vocational Rehabilitation. Both were available for continuing legal education credit, and Martinis generously encouraged attorneys in the audience to steal his language for powers of attorney and other legal instruments. Also importantly, Martinis directed audience members with questions to Indiana Disability Rights, the State’s protection and advocacy agency.

My afternoon workshops were presented by Stephanie Woodward, Director of Advocacy at the Center on Disability Rights. Woodward came from New York to encourage Indiana’s
woodwardadvocates to get more aggressive, and shared a number of tools people with disabilities can use to promote community change. On a lighter note, Woodward also thanked everyone for being a friend, leading the audience in multiple singings of the Golden Girls theme song.

Woodward’s Encouragements continue the following morning, when she was joined by  Associate Director of the White House Office of Public Engagement Maria Town. The two discussed their respective roles as activist-demonstrator and activist-on-the-inside. I was pleased that m_townmoderator Amber O’Haver asked my questions about the victories and failures of the Obama Administration, hopes and fears about the Trump Administration, and  tips for advocating for the Disability Integration Act. I also enjoyed listening to Woodward and Town given their inside perspective as people with disabilities; they felt authentic.

The final major presentation was by Dr. Ruthie-Marie Beckwith, author of the intriguing book Disability Servitude: From Peonage to Poverty. (Yes, it is the most expensive book I’ve ever purchased for “pleasure” reading.) Beckwith’s presentation was especially riveting in that Indiana is currently home about 40 sheltered workshops. Beckwith was clear in beckwithconcluding that people with disabilities have historically been treated terribly in sheltered workshops and other institutions where labor is not remunerated equitably, and multiple people expressed discomfort with the presentation. Personally, I was glad to see that so many people were uncomfortable – Indiana needs to innovate and offer people with disabilities alternative employment opportunities that permit them competitive wages within their community.

Of course, the Conference would not be complete without a few words from me! My colleague, Bonnie Bomer, and I gave a workshop following Dr. Beckwith’s presentation entitled “A State That Works… For Subminimum Wage.” Our workshop was the first time Indiana Disability Rights released data collected during its sheltered workshop site visits occurring across the state in Summer 2016. We got a lot of great feedback, and anticipate sharing the data with others again soon.

I’m already looking forward to 2017’s Conference on Disability. What are your ideas for themes, workshops, and presenters?

Chicago Architectural Tour

I really dislike Chicago. It could be the wind, the cold, the inaccessibility, its politics, or some combination thereof. Up until last week, I would say that I hated Chicago. When I discovered I would be going to Chicago on a business trip (for RSA’s regional conference on the Work Innovation and Opportunity Act regulations), I predicted spending the majority of my time holed up in the hotel room, reading something on my iPad.

However, my sister decided to tag along. Despite having lived in the Midwest her entire life, she’d still never been to Chicago at the ripe old age of 25. Goal: Taking her to see the Bean. No reading for me.DSC02265.jpg

After the obligatory photo session at the Bean, we decided to visit Navy Pier. We were thwarted twice, both occasions involving walking down long straights of sidewalk only to reach a curb at the end. As we made our way closer to the lake, I saw a kiosk for architectural boat tours. Were they accessible? No. The only place to load the boat in a wheelchair was at Navy Pier. On the bright side, the kiosk ladies directed us toward the most accessible pathway.

Despite the fact that boat tickets were more expensive at the Pier – $35 a ticket rather than $33 – I’m a nautical nut. If there is a boat ride available, I will find it – even in the middle of Arizona! (True story; ask my sister.)

The boat tour is frankly the reason why I no longer hate Chicago. I learned interesting facts about postmodern architecture, brutalism, and the Chicago Fire. Tour Guide Adam told us heinous stories about the Chicago River, including the fact that it was so filthy it lit during the Fire. He also explained that City officials rerouted the river, so that the filth would flow down to St. Louis rather than into Lake Michigan. (I guess I’m not alone in my dislike of Chicago…)DSC02366.jpg

Anyway, I highly suggest the architectural boat tour for any fans of history, trivia, or boating. While they ramp was not ADA-compliant, it was easy enough for my power wheelchair to get on and off. Wheelchair seating was in a designated section, but was sufficiently spacious for me to turn around and look at buildings and bridges from all angles.DSC02329.jpg

Live and Let Die? No Way!

You might have read the story of Jerika Bolen recently. I know my friends in the disability community have been trying to reach her and share their stories and resources. Unfortunately, it seems that the media and much of the non-disabled world is ready to say goodbye to her – and even facilitate her death.

According to the story, Jerika is 14 years old with SMA, Type II. Although the writer characterizes SMA as “an incurable disease,” many technological advances have made it possible for people with SMA to live productive, fantastic lives. I know this because I have the same disorder.

Jerika has expressed a desire to withdraw medical support. In her case, a ventilator helps sustain her life. She has apparently asked for the provision of morphine and the withdrawal of the ventilator so that she can pass away. Her mother – her natural guardian – has assented, and the death is planned for the end of the summer. I’m hoping someone intervenes.

I understand that SMA affects everyone differently. My sister has the same disorder, and we both have different medical concerns. One of mine, as in Jerika’s situation, is chronic pain. It took me more than a year before I found a doctor that was willing to work with me and identify means of managing the pain. That year was incredibly difficult; when I felt pain, I couldn’t focus on work, and when I didn’t feel productive, I felt useless. Relatedly, Jerika has indicated that she doesn’t like taking her pain medicine because it puts her to sleep. Alternating between sleep and homework makes her life dissatisfactory, she says; in effect, the pain is controlling her.

Obviously, I can’t speak to the degree of Jerika’s pain nor the treatments she has tried. However, I want to encourage her to keep looking for treatment solutions. Something tells me that waiting until one’s pain hits a “9” or a “10” is an ineffective strategy for managing chronic pain. Perhaps a new specialist is in order.

The other major issue to address is the fact that Jerika is a minor at 14 years of age. (Remember Julianna’s story?) Yes, 14-year-olds should definitely have input into medical matters. But input is distinct from decision-making capacity. I will concede that Jerika likely knows more about SMA than many of her physicians. But at 14 years of age, Jerika doesn’t know what the future holds or much of life beyond childhood.

I was miserable as a teenager. I think many kids are. But able-bodied children are taken to counselors to get their issues addressed. Why is it that kids like Jerika are simply handed a bottle of morphine?  The sad fact is that society devalues the lives of people with disabilities, of people like Jerika, of people like me.

Many outside of the disability community who have weighed in on this story have attempted to frame the issue in terms of respect for autonomy. This argument is disingenuous; a 14-year-old child does not have the legal capacity to make autonomous decisions in America. Respect for Jerika should be demonstrated as respect her life.

American (Unf)Airlines

If you read any mainstream newspapers or blogs regularly, you’ve probably read at least one story about the horrors of air travel for people with disabilities. Not too long ago, I shared my own experiences with TSA in a blog for the MDA Transitions Resource Center. A The latest transportation entity on my shit list? American Airlines.

Saturday afternoon, I left for Reagan National to attend a housing conference. (More on that later.) Usually I fly Southwest, but no flights were available when I needed to arrive. Alas, American was my only option. Maybe next time I’ll just stay at home instead…

A quick explanation of procedures for those not familiar with the disabled boarding process: I’m not allowed to bring my wheelchair onto the passenger area of the aircraft. Airlines require that I be transferred at the end of the jetway. In regard to who carries me to the aisle chair, I have no choice – it’s whoever the airline sends. The type of training – if any – that these staff members receive is beyond me. Nonetheless, I am entirely at their mercy.  Then, different staff members come to the end of the jetway, and whisk my wheelchair away to the underbelly of the plane.  I am strapped into the aisle chair, taken down to the bulkhead, and transferred to the aisle seat. Nerve-racking is an understatement.

img-resize.asp.jpeg

On Saturday, we got to the airport early and asked the check-in woman if she could go ahead and tag my wheelchair and transfer us to the bulkhead. Unlike Southwest, the check-in woman stated all accommodations need to be granted by the gate agent. So we proceeded to go through TSA. Fortunately, my inspection went rather quickly and the agent didn’t even pat me down – just my wheelchair. My experience with the gate agent was not so fortunate.

The gate agent stated that she wasn’t sure whether we could be moved to the bulkhead. Something about people paying extra for bulkhead seats. Nevertheless, after I explained that it is difficult to get me into the airplane seat given the four people involved in the transfer and cramped space, the gate agent promised to see what she could do.

The gate agent never followed up with me, so I figured everything was good to go. However, I was shocked to learn – only after I was strapped into the aisle chair – that we were stuck in seats 11A and 11C. Those seats were almost the very last in the plane! Apparently the gate agent told my mom that the people in the bulkhead paid a premium for their seats and were unwilling to move. Funny that she didn’t have the courtesy to deliver the news to me.

As the transferers pulled me backwards down the aisle, my butt and stomach began to  scrape against the seats on either side. The sling that I sit on to transfer was also getting caught on the seat armrests and ripped. When staff realized what was happening, the man behind me would immediately stop pulling the chair, causing the woman holding my arms to step on my toes. It was painful, but they acted oblivious. Three aisles back, someone from Baggage stepped onto the plane and said it was ridiculous that I was not sitting in the bulkhead. No shit, Sherlock. My mom explained that the gate agent denied my request for accommodation, and though the baggage person kept talking about the ridiculousness of the situation, no intervention was made on my behalf.

Even after I got on the plane, I still wasn’t good to go. Baggage couldn’t get my wheelchair onto the plane. Staff told me they would tip it sideways and see if that worked. I told the baggage handler not to tip my wheelchair on the side with the joystick. Then they gate agent boarded to inform me that if my wheelchair didn’t fit on the plane, I would have to deboard and wait for a different flight. Approximately one hour after the scheduled time of departure, we finally took off for DC.

My reception upon arrival was similarly demeaning. A single man came to help me off the plane after everyone else left. Without even talking to me, he bent down like he was going to try to move me. I said, “No,” and my mom explained how to transfer me with the sling. We also explained that more people were needed to safely do the transfer. He ignored us, and grabbed the sling in a place that would be completely useless. Again, my mom tried to explain that we needed more help. He ignored us, but a woman finally joined him. They transferred me to the aisle chair. I started to slide, and stated that I needed to move backward. My mom lifted the sling to offer it to the man, but he said he was going to pick me up under the arms. I said I could not do this, and he told me I could. My mom put her arm over me to stop him, and the woman eventually got him to listen.

You might think that was enough for one day, but no. Because we did not land at a jetway, we had to take a shuttle back to the terminal. A fellow passenger was on the shuttle, and he started rudely talking about how waiting for my wheelchair to be loaded was an inconvenience. He suggested that I reschedule my flight home to avoid such delays in the future. To add further insult to the toe, stomach, and butt injuries, the guy who would’t listen to me on the plane tried to command my mom to drive my chair off the shuttle. Despite having witnessed me drive onto the shuttle, the man didn’t believe that I could safely exit it.

Once I got situated fully in my wheelchair, I realized it had been broken. More specifically, my left armrest was bent downward and no longer supported me. I was worried that I would fall over riding to the hotel on the Metro. So we stopped at the baggage claim area and explained the problem. The baggage claim woman stated that we would have to file a formal complaint. My mom stated that she could fix the armrests if given an Allen wrench. Three times the woman denied this request and said the only way to get my wheelchair fixed was filing a complaint. Fortunately, someone overheard, had mercy on us, and found someone with an Allen wrench. However, our helper informed us that if the airline knew what was happening, it would have the helper’s head. Abso-fucking-lutely ridiculous.

But it gets worse, friends. I had to return home on Tuesday.

Although my mom and I had no intention of booking a different flight, we did get to the airport super early in order to arrange for necessary accommodations. We approached the gate agent, she glanced at our tickets after ignoring us for several minutes, and mumbled something indecipherable. “What?” my mom asked. “Over there! Indianapolis!” the woman barked, nodding toward Gate 39.

We walked to Gate 39, but that was for a flight leaving Indianapolis at 3:30 PM. We were set to leave at 4:45 PM. My mom asked the new gate agent if our flight had been moved, and she acted as if we were crazy. Our boarding passes clearly said Gate 41. Was there anything this gate agent could do for us, my mom asked. She was shut down.

So we made our way to the Customer Service desk. Its staff indicated that no gate agent can help a passenger unless it was 30 minutes or less until the flight was scheduled to board. We explained that we needed to get things in order before the flight, especially since disabled people board first, but were told nothing could be done. As we waited another hour, our gate was changed again.

The new gate agent was a friendly man, but he was immersed in the details of the current flight and could not help us. He asked us to wait to the side of the desk, and my mom told him that was fine, provided we would be first in line for assisting passengers on the Indianapolis flight. He agreed. Then the airline called him to a different gate, leaving ours unstaffed. I waited in front of the desk for another 15 minutes or so before another man came to the gate. He just ignored me. It was not until my mom returned from going to the bathroom that he began speaking with her.

He stated that bulkhead seats are premium, so he could not move us. My mom asked if there was anyway we could be moved to the second row, so that I wouldn’t have to be pulled all the way back through the plane again. The gate agent literally walked away without responding.

Oddly, a different guy walked through and stated that someone from baggage would be coming to learn how to take care of my chair. My mom and I asked about getting our seats changed and getting help for transferring, and the man said we would have to work with the gate agent. When a gate agent came back, we tried again. He ignored me again. He wouldn’t even look at me, so I began to state in a raised voice that I needed to speak with someone about reasonable accommodations!

The man who was concerned with Baggage returned, and my mom attempted to intercept him before he left for a different gate. He talked to the gate agent, and said that the airline could do nothing to move us to different seats. Keep in mind that not only were my mom and I not sitting in the bulkhead – we were not even sitting in the same row! I cannot hold my head up on an airplane seat, let alone keep my body in the chair during landing. We explained all of this, but were told that nothing could be done. The man who is not the gate agent shouted to everyone waiting at gate that my mom and I would like to sit together, and the airline would accept volunteers to let us do so. He never explained why the request was made (aside from pointing us out in front of everyone), but he was sure to let everyone know moving was completely optional. It was humiliating, and I was terrified about what would happen to me.

A few minutes later, the man came back and said that I needed to board the plane. No one had come from Baggage. No one had told me that my seat had been moved. Somehow, miraculously, and without any volunteers, the gate agent managed to transfer us to the bulkhead, together. Why he couldn’t do this earlier is beyond me.

We waited for everyone to board. Then we waited to taxi to the runway. Then we waited longer. Then we waited more. Then we were told that we were going to be waiting a lot longer, as our flight was in the path of a storm.

Initially, we were given updates every half hour or so. Then the updates stopped until we were informed we needed to refuel. Cleverly, it was then that the airline decided to give us pretzels and the glass of water. This was about at the two-hours-of-waiting mark. We should have landed by then. In fact, I was counting on having landed by then.

My two major reasons for not enjoying flying – aside from having to deal with airline staff – are pain and not being able to go to the bathroom. I took appropriate pain medication for a two hour flight, and my back was starting to feel the agony. I also had not gone to the restroom since approximately 7 AM that morning. I thought I would be able to pee by 9 PM at the latest. Wrong, and my bladder was starting to get angry about it. Nevertheless, airplane bathrooms are so tiny, I cannot use them. I believe most domestic flights carry an aisle chairs, but the stewardess never offered me one. She never even asked if I needed any help, despite watching me wince and writhe. I begged my mom to signal the stewardess and ask if there was any way I could get off the plane, but my mom said we would have been informed if we were allowed to leave. In fact, we had repeatedly been told to keep our seatbelts on.

All told, I was on the plane for over six hours. Agony. If I can help it, I will never use American Airlines again.

Third-Place Team Still #1

This weekend, I headed to Fort Wayne, Indiana for the 2016 MK Battery Premier Cup. For those of you unfamiliar with power soccer, check out this awesome video (made by my sister/teammate) and the United States Power Soccer Association. My team, RHI  Sudden Impact, finished third.

13503056_10200720771039368_6328535161979867922_o.jpg

I know – why would such an awesome event be held in Fort Wayne, of all places? In the past, we’ve gotten to travel to Tampa, Phoenix, or at least stay in Indianapolis. There is one cool thing I can say about Fort Wayne, though. The Plassman Athletic Center has power soccer courts. That’s right – the court markings are actually inlaid!

Another awesome fact? I got to use a Strike Force wheelchair for the first time! In the photo above, one of my teammates, Emmanuel, is missing. (Apparently he got a better offer and traveled to Virginia Beach to celebrate high school graduation.) So I got to use his $8000 sporting chair and spin myself dizzy. Suddenly, the sport became much, much more fun!

I’m looking forward to next year, where we will shoot for the championship. Aside from how awesome it was to win my first power soccer trophy after approximately a decade of playing, my hilarious teammates and coach definitely make RHI Sudden Impact #1 for me!

Dear(ly Departed) Julianna

My heart is broken. Many of you are familiar with the awful tragedies that have affected Orlando as of late – an absolutely horrific terrorist attack at a gay nightclub and a boy killed by an alligator at Disney World. But the death of Julianna Snow also occurred recently, going largely under the radar.

You may have heard of Julianna, the five-year-old girl who media outlets portrayed as choosing “heaven over hospital” in the event she got sick again. I, and many of my friends with neuromuscular disabilities, felt a special kinship with Julianna. She, too, shared a neuromuscular disorder that involved use of a wheelchair and respiratory therapy. (She also believed one could never have too much glitter, which I personally feel is a great motto.) News coverage and the underlying news item – that Julianna’s parents would allow a child so young to refuse life-saving measures – concerned us deeply.

Aside from personal views, the item was probably deemed “newsworthy” because it diverges from bioethical and medico-legal norms. Under American jurisprudence, one must give informed consent to treatment. Similarly, one needs capacity in order to exercise the right to make autonomous medical decisions. Traditionally, and as practiced by the American Academy of Pediatrics, whether or not minors can give consent is governed by the Rule of Sevens. That is, children younger than seven lack the capacity to make medical decisions; children ages seven through 13 have sufficient autonomy to be consulted in decision-making processes; and children ages 14 and above are sufficiently developed to participate heavily in the decision-making process. Keep in mind that Julianna’s parents surrendered decision-making authority to her at age five.

I don’t doubt that Juliana’s parents cared for her. Their compassion is evident in family video. But Juliana’s parents were heavily influenced by the medical model of disability; her mother is a physician. Because doctors cannot cure disability, they tend to be baffled by it. In fact, physicians regularly underestimate the quality of life experienced by people with disabilities. And there is no doubt that Dr. Moon (Julianna’s mother) glorified heaven, describing as a place where Julianna could run and play

Are you beginning to see the problem? Even in a wheelchair, even with a ventilator, Julianna could have driven quickly enough to feel the wind blow through her hair and engaged in a bevy of joyous activities. To demonstrate the bright future awaiting Julianna, Emily Wolinsky launched the Dear Julianna Project, administered by NMD United, a peer-led advocacy group for adults with neuromuscular disorders. Many adults with disabilities – from around the world – wrote not only to Julianna’s family, but to the families of other diagnosed children, to share that the future is not doom and gloom. We have each had our fair share of hospital stays and unpleasant medical procedures, but we are also attorneys, artists, spouses, entertainers, volunteers, philosophers, and parents.

I often wonder whether Julianna had the opportunity to read any of our letters (or have them read to her, considering her age). Her parents were aware of the Project, and claimed it was “basically a slap in the face.” Again, Dr. Moon’s reaction shows a real failure to understand the disability perspective.

I hope you are happy in heaven, Julianna, but I don’t care whether you remain in a wheelchair. It need have no bearing on the enjoyability of one’s existence.

The author wishes to disclose that she is a participant in the Dear Julianna letter-writing campaign, and also contributed financially to it.