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Disability discrimination at Super 8 Hotel in South Bend, Indiana: A complaint and responses

Date: October 31, 2016



The original letter

October 29, 2016

Expedia Inc.
333 108th Ave NE
Bellevue, WA 98004
accessibility@expedia.com

Ganesh Hotels
3252 Cassopolis St.
Elkhart, IN 46514
info@ganeshhotels.com

Wyndham Hotel Group
22 Sylvan Way
Parsippany, NJ 07054
wyndhamcc@wyn.com

Dear Customer Service Representatives

My name is Emi Koyama and I am writing to make a formal complaint about the experience I had at Super 8 Hotel in South Bend, Indiana operated by Ganesh Hotels on October 27, 2016. The room was booked on September 24th through Expedia.com. I was visiting South Bend to give the 2016 Gloria Kaufman Memorial Lecture at Indiana University South Bend.

I understand that some people (I’m not sure who they are) who read about the incident on social media have contacted some of you, but I thought I’d provide my own account directly.

At around 6pm, I was dropped off at the hotel by the ADA paratransit service (Transpo Access). I went in and asked to check in, but I was told that there would be a special fee for my dog. I explained to the clerk at the front desk that the dog was a service animal, to which she demanded to see a document identifying the dog as a service animal. I explained to her that there is no such thing, and the documents that some travelers may present carry no legal weight.

Still, she insisted on seeing the document. As I was prepared for this, I pulled up a Department of Justice guideline on ADA service animals on my iPad, which read, in part:

When it is not obvious what service an animal provides, only limited inquiries are allowed. Staff may ask two questions: (1) is the dog a service animal required because of a disability, and (2) what work or task has the dog been trained to perform. Staff cannot ask about the person’s disability, require medical documentation, require a special identification card or training documentation for the dog, or ask that the dog demonstrate its ability to perform the work or task.

I have encountered resistance from restaurant and hotel employees who were not trained about these legal requirements, but usually showing this document resolved the problem. This time however, the front desk clerk suggested that the federal regulation I pulled up may be “fake” because I just got it off the internet, and continued to demand a documentation. I asked her to use her own computer or phone to look up the document from the Department of Justice website to make sure that it is legit, but she refused to do so.

The clerk then called her manager, and, after explaining the situation to the manager, handed the phone over to me. I explained the federal regulation on service animal and read the paragraph I quoted above to the manager, but she also insisted that the documentation was required, because I could be lying about the service animal or the federal regulation. Again, I asked her to go to the Department of Justice website herself to find out if I was “faking” the law, but she declined. I asked the manager for her name, to which she replied “Sara” but refused to provide her last name. I gave the phone back to the clerk at her request, by which point the manager apparently made the decision to refuse service to me.

After hanging up the phone with the manager, the clerk told me that the hotel has decided to refuse service, which is clearly an abuse of discretion a business has and a violation of federal civil rights law (and probably Indiana’s as well—though I have not done any research about the relevant state law). I asked the clerk if I could stay in the lobby while I ask the people from the Indiana University who invited me to South Bend could come meet me and help me figure out what to do, but she insisted that I had to leave the building immediately or she would call the police on me.

Thus, I found myself and my dog freezing outside in a cold rainy weather of about 40 degrees temperature with strong wind blowing at around 6:30pm. Because I was dropped off by the ADA paratransit, which requires a reservation at least a day prior to the date of travel, I had no transportation. Further, I use electronic wheelchair which does not fit in most cars or cabs, so I had no place to go or means to get there.

I was desperate for help from someone in the area who could take me to a different place or at least come and let me get in their car so my dog and I could be warm at least, so I posted an urgent request for help on social media. I did not ask anyone to complain to the hotel, but apparently some people did, and the clerk came out at around 7:25pm after almost an hour of freezing outside in cold rain, and told me that she was letting me check in. At that point finally I was told that the hotel would accept my dog as a service animal. (I posted an update to the original social media call for help letting everyone know what happened after entering my room.)

What happened to me that evening is not just a violation of the federal Americans with Disabilities Act, but also a failure of basic human decency. The clerk was clearly not trained on the legal obligation under the Americans with Disabilities Act, and the manager was also ignorant about it, but they also lacked imagination about what it would mean to throw out a customer with a disability using a wheelchair who have traveled from afar in a remote area where there are no other businesses or public transit or anything nearby on a cold rainy night.

Ganesh Hotels: How do you train employees or hotel managers on legal obligations under the Americans with Disabilities Act? How did this failure occur, and what are you doing to ensure that it will not happen to other people? Remember, I happened to have the knowledge of the ADA guideline and social connections that allowed me to get inside eventually, but other customers might not and they still do not deserve to be left freeing outside.
Wyndham Hotel Group: What protections are in place for franchisees bearing your brands (Super 8, etc.) are in compliance with the Americans with Disabilities Act? How was it possible for the entire staff at a Super 8 hotel to be ignorant about their legal obligations, and what are you doing to ensure that the same thing will not happen at other Wyndham-branded hotels?

Expedia Inc.: What do you do as a market facilitator to ensure that companies that you partner with are in compliance with the Americans with Disabilities Act and that it is safe for people with disabilities to book their travels with Expedia and your other sites?

I would like to hear your responses to these questions and also receive a formal apology from the manager of Super 8 Hotel in South Bend or someone above her. My friends have suggested that I should sue the hotel or demand a full refund. I would not go that far at this point because I was otherwise satisfied with the room and the booking process, but I think it would be fair and reasonable to ask for a refund for at least one night’s stay after I was left freezing outside for almost an hour in a strange city, wondering where I would go and how.

What I want out of this incident most is the assurance that the practice of disability discrimination is discontinued at Super 8 Hotel South Bend as well as at any other hotel under the control of Ganesh Hotels or in partnership with Wyndham Hotel Group or Expedia, Inc.

Thank you very much for your immediate attention to this problem. I look forward to hearing from you in the next couple of weeks.

Best,

Emi Koyama



Response from Wyndham Hotel Group:

Case # 3749437
Site # 14645

Dear Emi Koyama,

Super 8 Worldwide is in receipt of your concerns regarding your stay at SOUTH BEND , IN on or about 10/27/2016. We sincerely apologize for any inconvenience this has caused you.

Super 8 Worldwide appreciates you bringing your concerns to our attention. We take these matters very seriously. While Super 8 Worldwide is solely the franchisor of the Super 8 Worldwide trade name, trademarks, and service marks to independently owned and operated Super 8 Worldwide guest lodging facilities, we require all Super 8 Worldwide facilities to comply with applicable law, including the Americans with Disabilities Act and its directives. We have contacted the owner/operator of this facility regarding this incident and conveyed our expectation that he/ she take steps to address it adequately. As this matter is the responsibility of the owner/operator of the facility, the facility is in the best position to respond. Please direct further communications to:

Priti Jairam
4124 Ameritech Drive
South Bend, IN, 46628-9126
(574) 243-0200

Customer Care
Wyndham Hotel Group
Tele: 888-675-3379
Fax: 888-565-7707


Response from Super 8 Hotel South Bend:

November 1, 2016

Dear Ms. Koyama,

I, Priti Jairam, general manager at Super 8 South Bend, am writing this email to you on behalf of my employee to apologize. I deeply regret what happened on October 27th 2016 and hope that you accept my apology.

We do not handle situation like this lightly therefore, we would like to give you full refund of your stay with us. We would also like an opportunity to accommodate you in future as well.

Thank you for bringing this to my attention, if there is anything else I can further assist you with, please let me know.

Sincerely,

Priti Jairam
Super 8- South Bend
4124 Ameritech Dr
South Bend,IN 46628

Reclaiming Harm Reduction: a new zine released in time for the Harm Reduction Conference

Date: October 30, 2016

Just in time for the 11th National Harm Reduction Conference next week, I am announcing the publication of my new zine, “Reclaiming Harm Reduction: a collection” which compiles my writings related to harm reduction philosophy (excluding my numerous writings on sex trafficking and sex trade, which have been published in other zines). The new zine is available for order from my new online store.

zine cover

Here’s the introduction from the zine:

This booket/zine is a collection of my writings on the topic of harm reduction in my almost 20 years of activism.

Aside from the fact that I am presenting at the 11th National Harm Reduction Conference in San Diego next week (November 3-6, 2016) and wanted share my thoughts with people I meet there, I had a couple of reasons to compile some of my writings on this topic:

First, I live in Seattle area, where the phrase “harm reduction” has become a buzz word among people in the governemtn as well as in social service providers, which is welcome but its actual meaning is often lost in translation: many service providers use the term “harm reduction” when they simply mean that they don’t automatically exclude clients who are currently using drugs, but continue to have judgmental disdain for them or push a vision of “recovery” that does not reflect the needs or wishes of actual individuals who are coping with difficulties in their lives in the best way they know how.

Second, connected to the first point, I feel that harm reduction can be a lot more than just “a better way to deal with drug problems.” Drug use/abuse/addiction has not particularly been an issue that I deal with in my own personal life, but I encountered many of the similar failures of systemic responses to social problems, such as homelessness, violence against women, sex trafficking, and racism/classism/ableism/homophobia/transphobia/etc. In fact, harm reduction is the analysis that connects my involvement in various social justice movements, including advocacy of survivors of domestic and sexual violence, sex workers, intersex people, people with disabilities, and others. I wanted to compile a collection of my writings in these different movements to demonstrate a potential scope of harm reduction as a foundational philosophy and perspective.

That said, I also encountered limits of harm reduction, which I discuss in one of the essays included in this collection. While harm reduction helps us promote social interventions that meet the immediate needs of communities and individuals facing difficulties, it does not necessarily and automatically address the larger context of injustices in which these difficulties occur.

An example of this limitation that I address in the aforementioned essay is a suggestion that the distribution of condoms to U.S. military service members was a successful harm reduction program to reduce the spread of venereal diseases. While I agree such program may reduce the risk of venereal disease among U.S. soldiers, it does not address the violence of U.S. military interventions around the world itself, or the sexual violence too frequently perpetrated by the members of the U.S. forces against native women and girls. If anything, it might enable the U.S. to more efficiently and aggressively pursue military interventions across the globe that ultimately may result in more harms to the nations and peoples the U.S. decides to invade.

Harm reduction without an intentional commitment to the broader social and economic justice agenda can be reduced to a mere technology of population management. There are “harm reduction” housing programs in various cities where drug dealing and use are completely unregulated and unsupervised under the guise of “meeting where people are at,” where residents die from overdose every week without anyone outside of the building even taking a notice. Harm reduction should not be our communities’ excuse for being indifferent: while ultimately respecting how members of our communities choose to live, we cannot stop advocating for a better living environment for all of us, rather than simply pushing some of us aside in “harm reduction” ghettos and forget about them.

Essays collected in this booklet/zine span over 15 years of my writings, so some of the circumstances have changed since I wrote about them (I intentionally left out many writings that critiques the anti-trafficking movements because there are too many and I have compiled them into other booklets/zines). My thinking has also evolved in some of these areas as well. But overall, a commitment to harm reduction combined with social and economic justice continue to motivate my research and activism and it has only become more solidified if not sophisticated.

Thank you for picking up this collection, and I would like to hear what you think about them, or learn what else you are working on. Please feel free to contact me in any of the following ways:

Emi Koyama
PO Box 40570, Portland OR 97240
emi@eminism.org
www.eminism.org
Twitter: @emikoyama
Facebok: emigrl2

Table of contents:

What Businesses Should Know About Service Animals: A Guide

Date: January 5, 2013

[Download PDF]

Many people are confused about what service animals are, or what rights people using service animals have under Americans with Disabilities Act. This document is intended to help businesses understand what obligations they have to customers and members of the public who have service animals under law.

1. Service animals are not pets.

Service animals are different from pets because they are trained to perform tasks to assist persons with disabilities. Service animals must be allowed to accompany their owners wherever people without service animals may enter, even if the premises do not generally allow pets.

2. There are psychiatric service animals, too.

In addition to guide dogs, seeing eye dogs, and other more commonly recognized ones, some service animals are trained to assist people with psychiatric disabilities. The DOJ guideline lists dogs that are trained to calm people with post-traumatic stress disorder (PTSD) during an anxiety attack as an example of service animals that must be accommodated.

3. Service animals do not need to be trained by professionals.

Some service animals are trained by professionals to perform highly specialized tasks and are certified by established institutions. But service animals can also be trained by their owner, and do not need to receive any certification or license to be recognized as service animals.

4. Businesses cannot require any documentation.

Under ADA, businesses are not allowed to require any documentation for service animals such as a certificate or a physician’s letter. They are not allowed to demand people with service animals to “prove” that they are service animals, or to demonstrate their ability to perform tasks.

5. Tags/harnesses marking the animal as “service animal” are optional.

Some people with service animals put a tag or harness that marks their animals as service animals in order to inform other people, but they are not required. It is entirely optional.

6. There are only two questions businesses can ask.

When it is not clear that an animal is a service animal, businesses may ask: 1. “Is this a service animal?” and 2. “What work does the animal do?” Businesses are not allowed to ask what disability the person has, or to demand a proof.

7. Businesses can expect service animal to be under the control of the owner.

People with disabilities are expected to keep their service animals under control (not barking or making a scene) and on a leash (unless it would prevent the animal from performing the task). Also, service animals must be potty-trained. Businesses can ask a person using a service animal to leave the premise if he or she cannot keep the animal under control.

8. Businesses cannot discriminate.

Businesses cannot charge extra fees for people with service animals, even if they charge extra for people with non-service pets. They cannot isolate or segregate people with service animals from other customers, or treat them less favorably.

9. Fear or allergy are not legitimate reason to exclude.

Some people are afraid of dogs or are allergic to dogs, but these are not legitimate grounds to exclude people with service animals. When appropriate, businesses may need to accommodate both customers with service animals and those with allergic reactions, for example by seating them away from each other.

10. People with service animals cannot be singled out.

When service animals cause damages, it must be treated the same way damages caused by people are treated. For example, a hotel may charge for an extra cleaning fee for a mess made by a service animal if another customer who made a similar mess is also held responsible.

This document is based on “ADA 2010 Revised Requirements: Service Animals” issued by U.S. Department of Justice, Civil Rights Division.

(Also posted in System Failure Alert!)

Going Places with Your Service Animal: A Guide

Date: January 4, 2013

[Download PDF]

Many people are confused about what service animals are, or what rights people with disabilities have about bringing their service animals to places like buses, restaurants, schools, and other places. Some businesses violate the law when they refuse service to people with service animals out of ignorance, but we can’t demand our rights effectively if we don’t know them better than they do. This guide is designed for people who are interested in going to places with their service animal.

What Are Service Animals?

Service animals must be dogs (with some exceptions) that have been trained to perform a task to assist a person with a disability. They are different from pets, “companion animals,” or “emotional support animals” because they are specifically trained to do something for a person with disability.

Examples of “tasks” given by the Department of Justice include:

  • guiding someone who is blind
  • alerting someone who is deaf
  • pulling a wheelchair for someone
  • protecting someone who is having a seizure
  • calming someone during an anxiety attack (licking, nuzzling, etc.)

Service animals must be trained to do one of these things (or some other task), but they do not need to be trained by professionals. Some organizations train and certify dogs as “service animals,” but you or your friends and family members can train your own dog as well. There is no requirement for certification or registration for service animals.

What Are My Rights and Responsibilities?

Businesses, government buildings, clinics, and non-profit organizations that other people can enter generally must allow service animals. There are some exceptions, but they are very specific (such as an operating room at a hospital).

Service animals must wear a harness, leash, etc., unless these devices prevent them from working. They must be under control (not barking or making a scene) and must be potty-trained (they are able to hold off until they are in an appropriate place to relieve themselves).

What Are Businesses’ Rights and Responsibilities?

There are only two questions businesses are allowed to ask about someone’s service animal: 1. “Is this a service animal?” and 2. “What work does the animal do?” They cannot ask what disability you have, require documentation of any kind, or make you “prove” that the animal can perform tasks.

Businesses cannot charge extra fees for people with service animals, even if they charge extra for people with non-service pets (hotels, airplanes, etc.). They must allow service animals even if they do not allow other animals (restaurants, grocery stores). They cannot treat people with service animal any worse than they treat other customers.

Businesses can ask people with service animals to leave if the dog is out of control, or the animal is not potty-trained, but not just because someone else is afraid of or allergic to dogs.

Businesses can make people with service animal pay for damages their animals cause only if they would also ask customers without service animals to pay for damages they cause.

What Else Should I Know About Service Animals?

Some people make their service animals wear “service animal” tags, harnesses, or jackets. They are not required, but they might stop other people from questioning if your dog really is a service animal. You can buy them at a pet supply store or online.

This document addresses your rights in most places of “public accommodation.” There are different definitions of “service animal” or “assistance animal” for having service animals in housing (including shelters), or for air travel, which might give you more rights. Talk to your friendly disability justice advocate to find out more!

This document is based on “ADA 2010 Revised Requirements: Service Animals” issued by U.S. Department of Justice, Civil Rights Division. Download the original document, print out a copy and hand it to ignorant businesses to educate them!

(Also posted in System Failure Alert!)

European Court case over reproductive rights in Poland deals with the selective abortion of a fetus with Turner’s syndrome

Date: May 27, 2011

On May 26th, European Court of Human Rights ruled in favor of a woman in Poland who was systematically denied the opportunity to receive and find out the result of diagnostic test for her fetus in time to selectively abort the fetus. Pro-choice activists celebrate the ruling as a victory for the women’s right to choose.

But the fetus’ condition in question is Turner’s syndrome, which is hardly a deadly disease or totally debilitating condition. According to Turtle Bay and Beyond, a international law blog (from the Religious Right perspective, which I disagree with–but I’m just citing them for factual information) :

The applicant, Mrs R. R. gave birth to a girl suffering from “Turner Syndrome”, a chromosomal abnormality affecting girls, whose symptoms are generally a short stature and sterility. She unsuccessfully requested the prosecuting authorities to institute criminal proceedings against the physician involved in handling her case. Mrs R. R. claims that she has been subject to degrading treatment (art. 3) since she was unaware of the health of her pre-born child and was denied the genetic tests in a timely manner.

I am preparing to travel to San Francisco in four hours so I don’t have the time to fully analyze or respond to the case, but I just want to point out that there is a complicated history of dialogues between reproductive rights movement and disability movement over cases like this, which appears to be completely ignored in the celebratory tone of the pro-choice groups’ responses.

Without going into whether or not a woman’s right to choose extends to the right to selectively abort fetuses on the basis of its real or perceived disabilities (or sexual orientation, etc.), pro-choice activists need to recognize that this is a complicated matter and take special care not to imply that people with Turner’s syndrome or other conditions and disabilities do not deserve to live.

Further, if we truly believe in women’s right to choose, we need to work toward eliminating societal barriers to raising children with various conditions and disabilities or to living with such conditions. The birth of a child with Turner’s syndrome does not need to be a tragedy to be avoided at all cost.

Trimet treats paratransit riders, but not regular bus or train riders, as thieves.

Date: May 2, 2011

Dear Trimet,

I am a LIFT paratransit rider and I am writing to express my concern about Trimet’s recent change of policy or its decision to enforce the previously unenforced policy to require LIFT riders to print their names on the back of their monthly passes and LIFT drivers to verify that the name on the pass matches the name of the rider.

The LIFT driver informed me that the change was made due to a concern that some people are sharing their monthly pass among each other, depriving Trimet of fare. I was further told that I would be reported as not having paid my fare even if I am waving a pass in their face, thereby threatening my transportation in the future, unless I write my name on the back.

I find it annoying and disturbing that Trimet would treat paying riders as thieves and free-riders until proven otherwise, but that is not my main complaint.

My main complaint is that this policy discriminates againt people with certain kinds of disabilities because people traveling on regular route Trimet buses and light rail trains are not burdened with such request. Regular bus riders could share a bus pass among themselves and they will never get caught, or asked to prove that they have actually purchased the pass.

The policy singles out paratransit riders–by definition people with certain types of disabilities–and subjugates them to an increased level of scrutiny that people who do not have these types of disabilities, even though they are equally capable of abusing their monthly passes.

If pass-sharing is indeed a serious problem, Trimet must enforce this policy equally to all of its riders, rather than singling out people with certain types of disabilities. Otherwise, Trimet should terminate the policy and stop putting paratransit riders under greater scrutiny than it does to all other riders.

Please know that I have signed my May 2011 monthly pass as “Rosa Parks,” so it will not match my real name. I will also encourage other people I know who use LIFT to sign their passes as Rosa Parks as well.

“Homosexuality, Gender Identity Disorder, and the Politics of Depathologization”–Alternatives 2006 Conference Keynote

Date: April 27, 2011

I was going through my computer, and found this slide from the keynote speech at Alternatives 2006 conference, an annual gathering of mental health client/consumer self-advocates and allies funded by Substance Abuse and Mental Health Services Administration, a branch of the federal government (with its baggage–read “Anatomy of an Epidemic” author Robert Whitaker’s experience of being invited, dis-invited, and then re-invited by the conference organizers due to his politics).

It was at this conference my bio simply stated that I was “an advocate” without specifically mentioning what sort of advocacy I do, because words like “intersex,” “transgender,” “queer,” “sex worker,” and others were unacceptable to SAMHSA (at least under Bush administration). Anyway, here’s the slide I used for my talk, which is pretty straightforward…

Rejected workshop proposal for Oregon Disability Megaconference

Date: April 29, 2010

It’s a shame that they didn’t think this was important enough to include in this huge annual conference.

Title: Organizing Support and Social Group for LGBTQ People with Developmental Disabilities within and beyond the Staley/Brokerage System

Description:

In January 2010, Bridges to Independence hosted a historic drag show featuring performers with and without developmental disabilities to kick off its LGBTQ Group, a new program consisting of support groups, relationship and safer sex education, community outings, and public events, for LGBTQ individuals with developmental disabilities.

The goal of the program is to support LGBTQ people with developmental disabilities become integrated into the community, especially within the local LGBTQ communities, while providing support and education needed to build and maintain health, safety, and self-esteem.

We also hope to challenge the local LGBTQ communities to become more inclusive of all members of sexual and gender minorities. In this presentation, we hope to discuss our experiences of organizing the group, difficulties we have faced, and how we addressed them.

A special attention is given to how we are funding the program: Bridges to Independence generally works within the Medicaid/Brokerage system of funding social inclusion supports, which we found to be inadequate to support ambitious projects such as this, partly because of the Medicaid’s increasingly narrow definition of what constitutes “disability-related support” (i.e. something related to someone’s disability and not to his or her poverty or sexual and gender identities, even though these things might be intimately linked to their disabilities), but also because many LGBTQ individuals are not enrolled in the brokerage system, and it would be difficult for someone who is not “out” to his or her family members or workers to sign up to receive services through the brokerage system. This realization forced us to seek non-traditional funding sources, such as LGBTQ foundations and LGBTQ community specific fundraisers.

We will also show a short video recording from our drag show, which demonstrates both the need for and the value of this program.

On Being Suspicious of Bioethics, or Reflections on the Profession In Search of Kinder, Gentler Protocol for Everything

Date: February 19, 2010

I have to get busy packing, since I’m heading to the airport very soon (off to Madison, Wisconsin, to attend/present at Midwest Bisexual Lesbian Gay Trangender Ally College Conference), but I want to announce that my article, “Why I am Suspicious of Bioethics,” was published in Bioethics Forum, an online publication of Hastings Center (title was decided by the editor, not me).

It’s partly about the prenatal administration of off-label medication intended solely to prevent genital virilization (clitoral enlargement in this case) in female fetuses, and also about the controversial “growth attenuation” treatment for children with severe developmental disabilities but it’s also about something larger: how bioethicists are becoming enforcers of established procedures and protocols (which are, after all, determined by the medical community) rather than instigators against injustices in medicine whether or not specifically prohibited by existing policies.

Anyway, I don’t have the time to discuss the article further, so go ahead and read on…

Growth attenuation treatment going mainstream, and the limits of disability studies

Date: January 27, 2009

Last Friday, I traveled to Seattle to attend the University of Washington symposium on growth attenuation treatment for children with “profound” developmental disability. This symposium was an update to the 2007 symposium that I have reported about earlier, and I came home more disturbed than I had anticipated.

The symposium was divided into two parts: first, organisers of Seattle Growth Attenuation & Ethics Working Group presented the outcomes of the Working Group’s discussions, then it was followed by a “group discussion” between panelists and the audience.

The Working Group was created three years ago when the controversy over six-year old Ashley’s hormonal growth attenuation (combined with illegally performed involuntary hysterectomy and mastectomy) surfaced. It included many scholars, lawyers, and at least one non-professional parent of a child with developmental disability, but no representative from the disability rights movement. Consequently, none of the panelists for the symposium were disability rights activists.

First speaker was Dr. Benjamin Wilfond (UW Professor of Pediatrics and Director of Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital), who gave an overview of the entire panel. He began by remarking that the Working Group had “good fortune” to have “interesting and stimulating conversation” about the topic, and that despite some internal disagreements all Working Group members shared a commitment to improve the lives of persons with disabilities and their families. Further, Wilfond explained, everyone developed a sense of appreciation for compromises the Working Group was able to reach.

While Ashley went through a combination of treatments that her parents call “Ashley Treatment”–i.e. hormonal growth attenuation, hysterectomy, and mastectomy–the Working Group focused on the ethics of growth attenuation, as it was genuinely new approach to treating children with severe developmental disabilities (unlike hysterectomy, which has been performed on these children for many years), and potentially most in demand.

What are the criteria that must be met for a child to become a candidate for growth attenuation? According to Wilfond, most Working Group members agreed that the child would have to have very limited ability to communicate or to move her or his body, and require total care including feeding, bathing, and toileting. Further, while the child’s condition need not be limited to any particular etiology, but must be presumed to be permanent.

Conspicuously missing from Wilfond’s discussion is the degree to which the child’s intelligence needs to be hindered. Ashley was said to have the intellectual capacity of a three to six month old baby, so I had assumed that any future protocol on growth attenuation would make similar level of intellectual capacity a requirement. Maybe I’m missing something here, but all I heard was that the child is permanently non-communicative and non-ambulatory.

Under these criteria, Wilfond estimates that about 4,000 children would become candidate for growth attenuation treatment in the United States, or about one in 1,000. This is double the estimated number of children being recognised as intersex and considered for genital “reconstruction” surgery each year. Not all parents who are offered this option would go for it, so the actual number of children treated would be less than this, but it is still a surprisingly large number.

Most Working Group members felt “somewhat uncomfortable” about growth attenuation, Wilfond continued, but they were mostly willing to accept parents’ right to choose such an option under certain circumstances.

Next, Sara Goering (UW Assistant Professor of Philosophy and Program on Values in Society) spoke about four main areas of concern raised by the disability community. These were: 1) devaluing of people with disabilities; 2) inadequacy of social resources for people with disabilities and their families; 3) risk of broader use; and 4) risk of stigmatisation. In other words, Goering was addressing possible negative social impact of growth attenuation treatment.

First, Goering stressed that we must view disability community’s concerns in the historical context in which people with disabilities have been and continue to be deprived of autonomy and physical integrity, emphatically by state-sanctioned involuntary sterilisation programmes. The concern here is that regardless of parents’ intention, growth attenuation could be viewed as reflecting the low status of people with disabilities, and can perpetuate adverse social attitudes.

Some have argued that disability studies perspective is irrelevant to the population being affected by growth attenuation, Goering said, but most Working Group members acknowledged that there are links between the treatment of people with milder forms of disabilities and those with “profound” developmental disabilities. Therefore, any protocol for performing growth attenuation therapy must involve disability studies perspective in some way.

The next question is the degree to which the demand for growth attenuation is the result of the inadequacy of social resources and services for people with disabilities and their families, and how wide-scale adaptation of growth attenuation treatment might exacerbate the problem. If growth attenuation could reduce the cost of providing care to people with profound developmental disabilities, then public funds could be redirected to promote the treatment, which in turn would take away funds from services to those who did not receive growth attenuation.

I feel that this threat is real and important, but Goering suggested dismissively that she was not certain that growth attenuation would reduce cost, and if even if it did that would not be a problem unless one finds growth attenuation unacceptable on principle to begin with. Her argument sort of reminds me of Slavoj Zizek’s re-telling of the broken kettle logic: I never borrowed the kettle, I returned the kettle in good shape, and the kettle was already broken when I borrowed it.

Next, Goering also dismissed the concern that, once accepted, growth attenuation would be applied to a broader range of children with various disabilities, such as those with Down syndrome or profound physical (but not developmental or cognitive) disabilities. The Working Group opposes broader use of growth attenuation for these cases, as it views one’s communicative ability to be the key criteria. With the development of clear eligibility criteria, Goering argued, the slippery slope could be prevented.

Finally, Goering considered the risk of stigmatisation to children whose growth is attenuated. She pointed out that people with unusually short stature are stigmatised in our society, but that may not be an issue among the population in question. She also pondered on the possibility that families could be stigmatised by their decision to choose growth attenuation for the child, but once again families with a child with profound developmental disabilities are already stigmatised.

In conclusion, Goering acknowledged that the larger disability community has legitimate concerns, but they are not significant enough to override the benefit growth attenuation presents to families with a child with profound developmental disabilities.

Dr. Doug Diekema (UW Professor of Pediatrics and Director of Education at Treuman Katz Center for Pediatric Bioethics) spoke next about the interests of the child whose growth is being attenuated. First, he considered the argument that having growth medically limited might disadvantage the child. Diekema explains: normal to above-average height is associated with healthy self-esteem and high social standing in our society, so being unusually short is a major disadvantage in life. That said, these issues are not likely to be relevant for the population being considered for growth attenuation, as these children lack social capacity to enjoy benefits of normal stature.

Then Diekema lists potential advantages of remaining small: a smaller person is easier to take care of, increasing the likelihood the child receives good daily care. A smaller body is easier to transport, which makes it easier to involve him or her in family activities outside home, such as walks and vacation trips. As the parents age, these advantages would translate to longer period of time they can live with the family instead of being shipped to a facility. There may also be some medical benefits too, such as less likely to be dropped by accident and injured. In short, Diekema stated, growth attenuation may not be necessary to meet goals of happy, integrated lives, but it makes it easier to do so.

In response to the argument that growth attenuation violates the child’s bodily integrity, Diekema raised a thought experiment: short stature could result from an act of omission, such as certain medical problems that are not treated, or from an act of commission, i.e. growth attenuation. If the endpoint is the same–the child remains unusually short–are there meaningful ethical differences? Diekema does not think so.

Diekema also discussed if the amount of attenuation might affect our ethical judgment. For example, is the final height of 2 ft. as opposed to 4 or 5 ft. acceptable? Also, is it just the final height that matter, or how much shorter the child is than she or he would have been otherwise? Many Working Group members felt that a large change in the final height would be a violation of the child’s dignity, as it is disrespectful to who the child is.

On the topic of dignity: there are two competing basic philosophies concerning human dignity: first view holds that dignity is inherent in all human beings for simply being human; the second, as expressed by philosopher Peter Singer, argues that dignity is accorded for the possession of some essential characteristics, such as being sentient or self-aware. Most members of Working Group accept the first theory; Diekema pointed out that Christian tradition also supports the first view.

The question then becomes: how do we respect a profoundly disabled child’s dignity? Some people feel that growth is a fundamental part of being human, and therefore is necessary to preserve one’s dignity; others suggested that being part of the community was more important, and growth attenuation could help facilitate it.

Finally, Diekema recognised that accuracy of medical prognosis was a major concern for any growth attenuation procedure. In addition to diagnosis, we need to be certain about the permanence of the condition, as well as the child’s capacity, especially her or his ability to communicate. The child would have to be at least 3-4 year old for the doctors to be sure about the prognosis, Diekema explained, and the treatment should be done before age 6, according to “the endocrinologist who was with us” (Ashley’s endocrinologist Daniel Gunther has committed suicide since last symposium).

Next, Denise Dudzinski (UW Associate Professor of Bioethics and Humanities) spoke about parental decision-making and oversight. In general, we allow parents to make many decisions on their children’s behalf, except when there is a risk of serious harm that is not justified by the corresponding benefit. In the medical setting, providers can refuse to provide requested interventions, but otherwise give deference to the parents.

Parents’ motivations for requesting growth attenuation vary, but parents’ interests are often intertwined with children’s interests. FOr example, both may enjoy family and social activities together outside the home, and growth attenuation might help make it happen more readily. Parents also must balance the interests of the child’s siblings and other family members, as well as their own because parents’ interests also count, Dudzinski said.

Sometimes, parents may appear to be pursuing their own interests, such as when they request growth attenuation to reduce their own burden, but it may still result in positive effect on the child. Dudzinski urged doctors to respect parents’ special knowledge and insight and to view them as partners in providing care to the children with disabilities.

Dudzinski then spoke about the “robust” informed consent procedure which parents should go through before growth attenuation is performed. Informed consent generally requires the patient’s willing acceptance of the treatment after a full disclosure and understanding of potential risks and benefits, but in this case we must be particularly mindful of the history of involuntary sterilisation that parents obediently “consented to” on behalf of their disabled children.

A “robust” informed consent must provide a balanced information, such as that benefits and risks of growth attenuation is still debatable, and a referral to other parents who made various choices. Dudzinski also stated that medical professionals need to make parents aware of social and historical context surrounding the treatment, including a sheet explaining disability activists’ opposition to the procedure. Dudzinski compared this to the guidelines being promoted by intersex activists and allies for parents of children with intersex conditions, or disorders of sex development.

As for oversight, there are two main routes: judicial review involving guardian ad litem, or internal ethics committee or consultation services. The court is often uncomfortable about and ill-equiped to rule on such private medical matter, and many physicians are uncomfortable about getting directions from the court, Dudzinski said. Instead, she argued, an ethics committee involving a variety of perspectives, including that of disability studies, could be employed to make recommendations on case-by-case basis.

Dudzinski also promoted the idea that research could provide an additional layer of oversight. The very process of research itself would require institutional review board and scientific review of protocols; in addition, it would allow us to make better decisions in the future. The research could employ prospective approach, or a creation of registry for growth attenuation cases.

The last speaker was Paul Steven Miller (UW Professor of Law, Director of Disability Studies Program), who reiterated Wilfond’s declaration that everyone in the Working Group worked together to improve lives of people with disabilities, respecting contrasting perspectives and appreciating the need for moral compromises. Growth attenuation is ethically appropriate and defensible, Miller said, but there needs to be safeguards. Providers should not go forward with growth attenuation simply because it is available and requested, and consider each case individually.

These safeguards come in three parts: clear eligibility criteria, robust informed consent procedure, and oversight. Further, research on outcome as well as scholarship on social impact of growth attenuation must continue, as does advocacy for persons living with disabilities. With this, an open discussion period began.

First, a mother of a grown child with autism took the mic. Her question: how can you rule out the possibility that advances in medicine might change the child’s disabilities? Diekema answered that realistic future progress must be taken into consideration, but it must be balanced with the benefit the family would be missing while waiting for the medical advances.

A pediatrician came up next, asking if there have been any other case reports, and if so what the impetus was for this treatment. Diekema disclosed that he had heard from several other doctors who performed growth attenuation therapy, and reported that all cases have gone well, and all parents are happy so far. As for the impetus, doctors used to routinely used hormone treatment to limit the growth of daughters of tall parents back in 1950s and 60s (when tall women were considered unmarriable), so there was plenty of data available. It was not so far-fetched to attenuate growth of profoundly disabled children using the same technique.

Next questioner, a psychologist, brought up two main questions: 1) what have other ethics committee decided in other growth attenuation cases, and 2) when the criteria restricts the treatment for “profoundly” disabled children only, it appears that these children are devalued in comparison to those with milder forms of disabilities.

Diekema replied once again, saying that ethics committee at other institutions also evaluated the proposed treatment carefully, and reached the conclusion similar to the Seattle Children’s. He further stated that at least two of them took place at major research university hospitals, each taking a year deciding on it.

As for the reason growth attenuation is offered as an option for children with certain forms of disabilities and not others, Diekema stated “regrettability” was a factor. By that, he meant that children who can develop enough intellectual capacity to regret the treatment he or she received should be spared from it. But since degree of intellectual capacity was not officially part of the eligibility criteria, I find Diekema’s comment confusing.

It appears to me that doctors are trying to have it both ways: when arguing why growth attenuation benefits the child, they talk as if the child is intelligent enough to understand the surrounding and enjoy being in the community; and yet, when people express concern about the negative social impact of the treatment, doctors dismiss the concern by suggesting that these children lack the capacity to feel harmed by it.

Diekema however seems to think that people with milder forms of disability are missing out: he stated that the strict eligibility requirement may be depriving beneficial treatment option from some people with disabilities, but he would rather “err on the side of caution.” Unfortunately the eligibility requirement does not appear to be that strict, or Dr. Diekema is that cautious.

Next, we had a pediatric neurologist or something, who raised the philosophical point that omission and commission are not morally equivalent. Being a philosopher, Goering replied that they were not equivalent when there is an element of uncertainty, but the difference becomes miniscule when the consequence of omission and commission are certain. Diekema also adds that doctors could harm the patient by not doing something, so the Hippocratic oath of “first, do not harm” can apply to both omission and commission when the harm is imminent. I’m not sure how I think about this, but such abstraction does not seem to be very helpful in our current discussion.

There were nobody at the mic, so I went up next, with two questions. First, I expressed how disturbed I felt about the media’s use of the term “pillow angel” to describe Ashley and other children who have been treated with growth attenuation therapy, and asked how the panelists felt. I mentioned that from parents’ perspective it was meant to be a term of endearment, but when it is adapted by the media as a general term to refer to someone whose growth is attenuated, it seemed to perpetuate the unwelcome infantilisation of people with disabilities.

Goering initially stated that it was parents’ prerogative to call their child whatever they like, but acknowledged that it might become a problem when the media popularises the phrase as a general term. She also shared concern about the infantilisation of people with disabilities, including those who receive growth attenuation treatment, and stated that parents’ motivations may vary but a robust informed consent procedure would ensure that parents understand that their children age and grow even if their stature remain small.

My second question was about the difference between judicial review and internal ethics committee. One of the key differences between the two is that in the judicial review, for example for obtaining permission to perform hysterectomy on a minor, an adversarial proceeding is required. That is, the court appointed guardian ad litem for the child is obligated to oppose the procedure, rather than vaguely standing up for what she or he happens to think is in the best interest of the child. The judge, hearing arguments both for and against the procedure, makes the decision. I asked if it might benefit the ethics committee proceeding if it were to incorporate adversarial structure in it similar to the judicial review–for example, by hiring a disability rights lawyer to make the best possible argument against the procedure.

Wilfond and Miller explained that the ethics committee can balance different perspectives without adversarial proceeding by ensuring diversity among its composition. Wilfond in particular said that it took him a while, but he had come to appreciate the role of disability studies perspective in his experience within the Working Group. But the problem is that no disability rights activists were invited to be part of the Working Group or the ethics committee for that matter, and the presence of some Ph.D.s and J.D.s with “disability studies perspective” were used as a smokescreen to mask the exclusion of disability rights activists.

Disability theorists such as Miller and Adrienne Asch, both of whom were part of the Working Group, might be able to provide alternative, critical perspectives on disability, but they are not substitute for dialoguing with disability rights activists. Even as Wilfond, Dudzinski and others continued to stress the validity of disability rights activists’ concerns, they had failed to invite a single activist to be on the Working Group or panel. I did not see any activists among the audience either, as they had so thoroughly excluded them, while paying lip service to activists’ concerns and to the importance of “disability studies perspective.”

After that, several mothers of children with developmental disabilities spoke out, many of whom had valid points. One woman said that when her disabled daughter grew larger than 4 ft. her dad could no longer lift her on his shoulder and take her out to a walk. A couple of women expressed understandable frustration at disability studies scholars who kept saying that more funding for services would solve the problem, while they wait many years with little help.

And even if resources were to magically appear tomorrow, it still won’t be enough: care providers and assistive technology can be helpful, but even in ideal circumstances they are not the same as being able to be alone with just family members, lifting the child with one’s own hands. Disability studies assumes that disadvantages faced by people with disabilities can and should be remedied by social change, but parents are suspicious of disability theory because they see a real weakness of this proposition. And they view growth attenuation is the solution.

Which is why I feel conflicted about the whole issue, and I am willing to accept that growth attenuation is not an absolute evil per se. But I fear the social and political impact of the wide-scale adaptation of growth attenuation as an ordinary part of contemporary society, with more children undergoing hormonal restructuring of the body for having developmental disabilities. I fear that what may be utility-maximizing on an individual level may, in aggregate, lead to a society where bodies are shaped for the sake of convenience. I fear that people with disabilities would be further pressured to reduce the burden they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the criteria for eligibility. And disability rights activists are virtually excluded from the whole process!

But this all seems inevitable now, and I’m not sure what we can do to limit the use of growth attenuation… Any ideas?

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