25 July 2016

Ableism is not "bad words." It's violence.

Content/TW: Somewhat graphic discussion of violent attack on disabled people; discussion of S.V. (rape).

Ableism is not "bad words." It's violence.

Photo: A police officer outside the facility, speaking to onlookers, in this photo taken by Kyodo on 26 July 2016. 

Earlier today, a former employee of a residential institution in Sagamihara, Kanagawa Prefecture, Japan, for disabled people (from children through elders), many people with significant disabilities and multiply-disabled folks, attacked residents with a knife, murdering 19 people and wounding 25 people.

The Sagamihara attacker was targeting the disabled residents of the institution.

He told police, "I want to get rid of the disabled from this world."

Don't you ever fucking dare try to say, "but who could hate the disabled?" to me again.

Don't. Dare.

We are not some innocent angels untouched by the realities of the world around us.

We are not unaware or oblivious to the existence of others, let alone of hate.

We know hate and we know violence, because it is written on our bodies and our souls.

We bear it, heavy, wherever we go. Ableism is the violence in the clinic, in the waiting room, in the social welfare lines, in the classroom, in the recess yard, in the bedroom, in the prisons, in the streets. Ableism is the violence (and threat of violence) we live with each day.

Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives -- they must have had it so hard, it must have been such a burden, you musn't judge unless you've walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)

Ableism is the fact that a police officer who shot an unarmed Black man with his hands up decided it made more sense to claim he was actually aiming for the Brown autistic man holding a toy truck beside the Black man.

Ableism is the fact that the left wants to talk about jails and prisons as the largest mental health care providers in the country, decry the crisis of incarceration of psych disabled people, and then suggest unironically that we build new facilities, new asylums, new institutions, new inpatient beds so that at least we can get "treatment."

Ableism is the fact that queer, trans, and asexual people fight so hard against medical neglect and abuse that in the rush to end pathologization of queerness, transness, and asexuality, we insist on distinguishing ourselves from anyone who is really mentally ill, saying that there's nothing wrong with us because we aren't those people, so at least we don't need medical and psychiatric surveillance, gatekeeping, and control (only they do). 

Ableism is the fact that when violence does happen to disabled people, it's framed as inherently more tragic and pitiable because we are supposed to be these innocent fucking angels, like babies (no matter how old we are), and it's particularly low to attack us (but apparently not to attack non-disabled transgender people or non-disabled Black people or non-disabled Muslims or non-disabled women -- all of that is totally okay and justifiable and besides, it must have been the victim's fault in some way).

Ableism is the fact that of developmentally disabled people categorized as women, anywhere from 83% to 90% will be sexually assaulted at least once in our lifetimes and on average at least ten times by the age of 18; the estimate for those categorized as men is almost 40%; all of these are likely severely underreported. Ableism is also the fact that when we do receive sex education, it often assumes that masturbation is the only "safe" option, and that anyone having sexual contact with a disabled person is automatically a fetishist or a predator or both. Rather than being about consent and autonomy, it's about "protecting us" or "keeping us safe" but where's the talk of victim blaming?

Ableism is the fact that anywhere from around 40% to 70% of U.S. prisoners are also disabled, and that the forces of white supremacy, racism, and capitalism that keep poor Black and Brown people in prisons are necessarily intertwined with ableist presuppositions about intelligence and emotional capacity. (And that all incarcerated people -- disabled or not -- as well as many free disabled people can be paid, completely legally, only a few cents per hour for menial labor, and that this is called opportunity and teaching work ethic.)

Ableism is the fact that it is totally legal to torture disabled people in the name of treatment and help and "for your own good" -- everywhere from the daily ABA torture sessions focused on normalization at the expense of our own mental health to the extremes of the Judge Rotenberg Center where we are shocked even for flapping or moving out of our seats.

Ableism is the fact that too many of my friends and online acquaintances are literally facing death, starvation, family separation, severe physical danger, denial of life-saving medical care, and other catastrophes right now, as I type these words, because they are disabled in a capitalist, racist world that does not want us to survive in it.

Ableism is the fact that on average, autistic people die 30 years younger than non-autistic people, with suicide as the second leading cause of death. As one friend put it, that's an act of murder by society, because it is so bad that too many of us decide that it is no longer worth trying to live in a world literally designed to destroy us from the moment we are first born.

They hate us, and we already know it. They aim for us. They mean to kill. They mean to harm. They know what they are doing, and we know it too. There can be no innocence, not for us. Ableism is not some arbitrary list of "bad words," as much as language is a tool of oppression. Ableism is violence, and it kills.

24 April 2016

Georgetown makes progress on disability, but continues to fail.

Photo: Chalkboard with text that says, "Uncovering Institutional Ableism at Georgetown."

I've been out of Georgetown for almost a full year now, but while a student, I spent a lot of time agitating around the rampant ableism pervasive everywhere from classrooms and news coverage to the student services infrastructure and everyday social life.

In October 2015, Georgetown brought in two external consultants with PhDs to conduct an audit/review of the Academic Resource Center, which among other things (student-athlete support and general academic support), is responsible for disabled students on campus. They completed and submitted their report in January 2016, identifying multiple systemic issues with the ARC, though in my opinion, the report could have been far more damaging than it already is (and which is no doubt the reason Student Affairs is refusing to provide the full version outside its division). Even the disability working group within the administration seems to have only received the three-page executive summary but not the full report. 

Earlier, The Hoya published an article on this report, quoting choice bits of it, but did not publish the actual document, which was a disappointment. Their editors, however, published an op-ed asking the university to make public the results of audits like the one spurring this report, so I have to assume that Georgetown's administration stepped in to prevent The Hoya from publishing the full report (or at least I have to wonder whether this was the case -- certainly seems questionable). So as an alumn who isn't currently beholden in any way to the university, I've taken the liberty myself of making the full 14-page report available to the public, both the copy I obtained and a complete text-accessible transcription (typos and all) on this page (below the text of this post). 

The public, and particularly, the Georgetown community and anyone disabled considering going to Georgetown or accepting a job offer there, should know about this fucking bullshit -- and more that didn't make it into the report, either because it was outside the scope, was omitted, or was unknown to the reviewers.

This report identified issues with all three areas that the ARC is responsible for -- support for disabled students, support for student-athletes, and general academic support.  

This report identifies numerous issues, including this lovely tidbit about the ARC's office horrifically and ironically being inaccessible to wheelchair-users (because that makes 100% sense for the office serving disabled students. okay.): 
Across all stakeholders, the ARC's space, located in the Leavey Center, was described as inadequate, embarrassing, and deplorable. The students underscored the problems from a user's perspective. The ARC is not wheelchair friendly which is disconcerting since it is the location of disability services for students.
Not to mention the signage issue (discussed in the report) -- there's also an old sign pointing to the old location of disability services behind Darnall, which, that's not where the ARC is now or has been for many, many years. (And until a couple years ago when I pointed it out publicly, the Braille sign for the LGBTQ Resource Center was literally posted above the doorframe, because, didn't you know, all blind people are eight feet tall.)

And this great description of the testing accommodations room ("great" here meaning "any adjective that would never ordinarily be associated with the term 'great'"): 
The room for accommodated testing, located on a different floor of the Leavey Center, can only accommodate nine students. Its location as separate from the ARC is problematic in that the ability to proctor exams is limited. Additionally, staff cannot fit in the room to observe and there is no technology to provide oversight. The room was described as a "former closet" and "claustrophobic." It lacks ventilation, becoming unpleasantly warm. Noise from the hallway contradicts the accommodation of a "distraction reduced setting."
The report even offers lengthy comment on the ARC's complete inadequacy in supporting student athletes (two staff -- one only for the women's basketball team, and the other responsible, in theory, essentially for the rest of the over 800 total student-athletes), which is also impressive (not in a good way) given the typical trend of universities spending disproportionate amounts of funding on anything athletic. The associate director responsible for most student athletes admitted that she resorts to text-messaging students instead of arranging face-to-face meetings because of the ridiculously overwhelming caseload.

The report notes severe understaffing across all three domains, which, if rectified, will also necessitate a move to a different space (and hopefully one that is actually physically accessible, though ideally, every space on campus would be physically accessible...). Note the literal devaluing of disabled students -- it's cool to spend $50 million on this brand new varsity athletic training facility, but why bother hiring more staff for disabled student support services? Let alone opening a Disability Cultural Center (which would cost far, far less to get off the ground).

Disturbingly, however, in making the important point that international students, low-income students, first-generation students, and other nontraditional students could benefit greatly from specific academic support resources, the report's authors claim that there is a disproportionate focus on disabled students and student-athletes.

Can we stop playing oppression olympics for maybe one half minute? Firstly, disabled students (and apparently student-atheletes), are currently being fucked over by a profoundly ableist campus community (in addition to the infrastructure issues discussed in this report) and are completely not a priority at all. Secondly, can we just not pit ourselves against each other? What about disabled international students, or first-generation and low-income students, or disabled low-income students, or disabled and first-generation nontraditional students? The struggles and experiences can not only overlap but can also blend.

Yes, let's bring in specialized staff to support international students, non-traditional students, first-generation students, and low-income students, alongside staff for disabled students and student athletes.

But stop talking about these completely underserved and nonexistent areas as though we have to be in competition with each other. That's what ablenormative, white supremacist capitalism wants -- competition with each other for limited resources instead of collective, intersectional organizing to benefit everyone currently marginalized by the way things are.

Another disturbing finding in the report -- that virtually everyone interviewed during the two-day review (side note: that is SUCH AN INSUFFICIENT AMOUNT OF TIME TO THOROUGHLY REVIEW HOW MUCH GEORGETOWN SUCKS ON DISABILITY) cited Jane Holahan and the ARC as the campus experts on disability. Yeah, let's all defer to the office that consistently denied a deaf student access to interpretation for anything outside classes, and denied a blind student access to brailled materials. Because that makes perfect sense.

(In theory, yes, the ARC should be a central resource on disability issues, but given its current systematic problems, I adamantly oppose centralizing disability-related functions and internal technical assistance there. The ARC doesn't work with the disability studies faculty, the National Center for Cultural Competence led by the fantastic Tawara Goode, or the Center for Child and Human Development -- a federally-designated University Center for Excellence in Developmental Disabilities. That's understandable to an extent -- faculty who do disability studies related work are focused on scholarship of disability theory; the NCCC and CCHD are primarily focused on cutting-edge research and policy development outside the university gates. But all of that only underscores the need for a Disability Cultural Center with full-time staff to serve as a central nexus for all things disability-related.)

For the same reason, the report's recommendation to train resident advisors, faculty, advising deans, and others who might interact with disabled students is great -- except where it recommends that ARC be responsible for that training. I don't trust them as far as I can throw them, and considering I'm a small human with little upper body strength, that's a no. Yes, do training on ableism and disability and how not to be a douchebag working with disabled students. But bring in people who not only know what they're doing but who aren't already embedded in the university and thus beholden to it (and likely unwilling to be critical at all, especially when critical is what is desperately needed).

In 2002, almost fifteen years ago, disabled students complained about inaccessibility at Georgetown, and Holahan responded then that change takes time. In 2008, physically disabled students and learning disabled students met with Holahan and the ARC again over inaccessibility and pervasive ableist attitudes in the classroom, only to receive the same non-response -- that the university is doing its best and that change takes time. In 2014, the university convened a working group ostensibly on "disability as a social justice issue," that interestingly, originally excluded me from the announcement about its inception and first meeting even though I held an official position on disability within the student government at the time. That working group released its own report last summer, which frustratingly also fails to articulate many important concerns or offer concrete timetables for its recommendations.

All of that history to say, the Academic Resource Center external review report is a great start, but it doesn't go nearly far enough.

Where is the talk of the school's tendency to pressure students with psych disabilities to leave? Or the talk of the school's continued physical inaccessibility, as dissected in an article published this week, which will be undoubtedly exacerbated by the continuing construction everywhere? When will d/Deaf students on campus have full access to all aspects of campus life? When will Georgetown begin offering courses on American Sign Language, to complement the weekly classes offered by student organization GU Signs? What about the pervasive institutionalized ableism in general and the long history of ableism overall? When will the disability studies course cluster lead to an actual minor in disability studies and the recruitment of additional disabled faculty, especially faculty of color? When will the administration commit to a plan for a Disability Cultural Center?

Will any of these five steps toward ending ableism at Georgetown that I wrote about in November 2014 actually happen? There's progress on two of them: GUSA and Student Affairs now have a central pool of funding to cover ASL interpretation and CART captioning at campus events outside academic classes, and in the fall, Georgetown brought on its first access coordinator within Student Engagement to oversee use of those funds and implementation of accommodations outside the housing and classroom contexts. (Side note: I'm excited they hired a woman of color into the position, but dismayed that they hired someone who previously had zero experience doing disability work of any kind.) But the other three? As far as anyone can determine, nothing.

This report is a wonderful start, but it is far, far from over.

Georgetown, as a disabled alumn and activist, it's well past time to get your shit together. Do better. Your disabled students at a minimum deserve to be at a campus that treats them like human beings, and right now, that doesn't seem to be the case for way too many of us. You now have the opportunity to start making things right, so the next cohort of students with disabilities might have a better experience than the folks I know who were literally driven out of your university because of the institutional ableism or the folks I know who right now are scared to tell their fellow students or co-workers about their disabilities for fear of retaliation.

The idea that Georgetown values cura personalis, the whole person, will remain absurd until the university makes a sustained commitment to dismantle ableism throughout the campus culture. Right now, I'm rather unwilling to believe that anything significant will change simply because this report exists somewhere internally. I'll be waiting to find out whether you'll actually act upon not only the recommendations in this report, but also the many, many other areas of total failure (and sometimes plain old mediocrity) on disability. I believe in actions, folks. It's great the external audit happened. Why keep the results quiet unless they're that embarrassing? And if the university is truly concerned or embarrassed, then you'd better get a move on breaking out of the pattern of reluctant appeasement and complacency.

I'm waiting. 

***

You can download or save the full report in PDF (not text-accessible). 

Since the PDF is ironically inaccessible, I have transcribed the following text-accessible version of the full report, attempting to preserve as much of the original formatting as possible as well.

***

Georgetown Academic Resource Center External Review

Review held: October 28-30, 2015

Report submitted; January, 2016

Executive Summary

The Academic Resource Center (ARC) is a department within the Division of Student Affairs which is responsible for providing academic support for all students with a special focus on supports for student athletes and supports for students with disabilities. The reviewers were charged with identifying the specific strengths of the department and suggesting areas for improvement, consistent with the mission of the division and Georgetown University. 

On October 28 – 30, the reviewers met with the staff of the ARC, colleagues within the division of student affairs, faculty and advising deans, the Disability Working Group, students, and other University partners including legal counsel. The reviewers concluded that the mission and vision of the department are in line with different respective fields and yet are not well integrated in an overall structure. Moreover, the resources and structure of the office are not consistent with best practice and indeed could pose a risk to the University regarding its limited ability to provide for legal and ethical accommodations for students with disabilities. Descriptions of the programs, services, policies and procedures of the ARC are not consistently communicated to students, staff and faculty. This can lead to confusion and lack of outreach to those who would benefit from the expertise of the ARC. We have outlined the strengths and challenges of the department and presented a number of recommendations.

Strengths:

  • The department mission and connections to the University mission actualizes the Jesuit philosophy in its approach to provide specific, caring comprehensive support for a diversity of needs in a context of promoting academic excellence. 
  • The dedicated and experienced staff are well respected by all stakeholders including students. 
  • There is connection and strong collaboration within the student development division colleagues, academic advising deans, office of diversity and equity and University Counsel’s office. 
  • The disability working group is caring and knowledgeable concerning individuals with disabilities. 
  • The students recognize that they are receiving adequate supports and they respect and value the ARC staff and yet they also see the necessity for improvement of ARC resources. 

Challenges:
  • Inadequate staffing has stretched a dedicated leader who does not have the time to structure the department and provide adequate supervision to the associate directors and other staff. 
  • The limited number of ARC staff has created a minimal ability to serve the populations it professes to support. 
  • Space is inadequate in size and function, misaligned and leads to separation of services and isolation of some students. 
  • Technology is not being used to address basic efficiencies including data collection, scheduling, administrative procedures, and assistive technology. 
  • The department branding does not clearly articulate the populations it serves on the website; publications are outdated. There is a need for a recognizable icon that includes the multi-pronged focus of the ARC. Indeed, even the Division of Student Affairs end of year report for 2013-2014 depicts the ARC with the handicapped icon, representing only 1/3 of its focus and a fraction of that population. 

Recommendations:

The reviewers are making recommendations in the following categories which are detailed within this report.

  • Increasing staff and revising current staff positions New positions needed include a Learning Strategies Specialist for Students with Disabilities; a Learning Strategies Specialist for the diverse undergraduate and graduate student populations; an Accommodations Coordinator; and an additional Academic Counselor for athletes. Additionally, several graduate students should be permanently budgeted. Revised positions include the current Associate Director for Student Disability Services and the current Disability / Learning Skills Advisor. 

  • Space and Location We are recommending relocating the Academic Resource Center to an accessible and well-traveled setting that includes enough offices to comfortably house ARC staff, student spaces, program areas, conference room and administrative areas. Recommendations include a Testing Center within the relocated ARC (or very close by) and the creation and installation of appropriate directional signage to the ARC’s current and future locations. 

  • Technology We are recommending technology and technological support to increase administrative efficiency, data collection, record-keeping, and monitoring of student-athletes progress. Increased technology should also include current assistive technology. 


  • Policies and Procedures Our recommendations include consistent branding of the ARC with consideration of all the populations that it serves, outreach efforts to normalize academic support, education for instructors and all university staff working with students with disabilities, and the improvement of procedures for hiring tutors. We recommend the creation of a liaison system to the ARC and also a committee to investigate the accessibility of institutional websites. 

These recommendations are intended to be comprehensive and consistent with best practices. Other highly selective universities (e.g. University of Pennsylvania, Harvard University) have or are increasing academic support services for all students, including students with disabilities. Nearby American University’s Academic Support and Access Center, with similar responsibilities and comparable enrollment, has a staff of 19 individuals. 

***********************************

Introduction

The Academic Resources Center (ARC), established at Georgetown University in 2003-2004, brought together learning support, disability services, and tutoring. Support for athletes was added at a later date. The current Director, Jane Holahan, assumed her position during Academic Year 1998, before the ARC's current configuration. Currently, the ARC's mission includes both disability and academic support services, with a particular focus on academic support for student athletes. The ARC is described on its website as "[providing] students with the tools and support needed for academic success" and divides these supports into three categories: Disability Support; Student-Athlete Support; Academic Support. These areas of responsibility, also highlighted in the Division of Student Affairs end of year report, 2013-2014, are mission central for a university that is committed to supporting its students, especially students who may be most in need of academic support programs and services.

As a Jesuit institution, Georgetown is committed to an education that helps students integrate their intellectual experiences with their lived experiences. The education takes into account the whole person and actively engages students with considering how their learning can be used for the greater good of our world. the ARC helps students ensure that they are able to grasp the intellectual offerings of the University by providing academic accommodations for those with disabilities, support and monitoring for those who are athletes, and general academic strengthening opportunities for those who need additional academic support. In the case of each population, there is an attempt to reinforce their identity development as scholars whose specific needs may require a specific academic approach. This provision of services specific to the needs is consistent with an Ignatian approach of meeting students where they are, and helping them to be open to improvement not only for themselves, but for others.

The ARC is one office within the Division of Student Affairs which is responsible for addressing the developmental needs of students. This review is designed to describe the specific strengths of the department and to suggest areas for improvement, consistent with the mission of the division and the University. The Vice President of Student Affairs and the Associate Dean have requested a review with a list of recommendations to impove the services and ultimately the experience of students at Georgetown University. 

The following individuals were invited to provide this external review and submit this report: 

Dr. Sheilah Shaw Horton has been the Vice President for Student Development at Loyola University of Maryland since 2011. She came to Loyola after a 25 year career at Boston College. In both universities she has overseen the provision of services for academic support for student athletes as well as supports for students with disabilities. Dr. Horton has a Ph.D. and a Masters' Degree in Counseling Psychology from Boston College and has taught in the department of Counseling Psychology.

Dr. Myrna Cohen is the Executive Director of the University of Pennsylvania's Weingarten Learning Resources Center. In this capacity, she directs academic support programs and services for all of Penn undergraduate, graduate, and professional students and oversees the University's Office of Student Disabilities Services. Dr. Cohen is also on the senior staff of Penn's College of Arts and Sciences and Adjunct Associate Professor of Education at Penn's Graduate School of Education. She received her Ph.D. in Education from the University of Pennsylvania in 1992.


Support for Students with Disabilities

Federal law, trends, and the ARC

Following national trends, the number of students with disabilities at Georgetown University has risen dramatically. In 1998, there were less than 200 students registered with the disability support office. This number grew to 660 students by February, 2015, an increase of over 200%. They have also noted a significant increase in students as a result of the growth in the School of Continuing Studies, including online at the undergraduate and graduate level. The numbers reflect a growing public awareness of disabilities, as well as the increased availability of federally mandated services in high schools for students with disabilities. Highly qualified high school students, accustomed to appropriate services and accommodations are attending postsecondary institutions with the expectation that the university will provide a continuation of appropriate services and accommodations. At Georgetown University, it is the responsibility of the ARC to provide services and programs that support the legal mandate for its students with learning, physical, and psychological disabilities and ADHD. This responsibility is significant since failure to address legal requirements can result in the institution's loss of federal funding. The Rehabilitation Act and the ADA prohibit discrimination against people with disabilities by institutions like Georgetown University that receive or benefit from federal financial assistance. These laws require that reasonable accommodatinos be provided to otherwise qualified students with a disability so that they have access to the same education and programmatic opportunities as their non-disabled peers. Both the Office of Civil Rights and the Department of Jutsice are charged with insuring that institutions adhere to these mandates. Moreover, there is a "greater ethical imperative to ensure that accommodations for differently-abled students are crafted responsibly and implemented with the utmost respect and dignity." (NASPA, 2015) An overview of the laws can be found on the website of the office of Civil Rights at http://www2.ed.gov/about/offices/list/ocr/disabilityoverview.html

The passing of the ADA Amendments Act in 2008 has made it "easier for an individual seeking protection under the ADA to establish that he or she has a disability." (NASPA, 2015) The direct effect on postsecondary institutions has been an increase in self-identifying students, more documentation to consider, additional accommodations to determine and, ultimately, to actualize. The effect on the number of exams to be accommodated is exponential. Additionally, the students and needs have become more complex. Nationally and locally, both the number of students with psychological disabilities and students with chronic health conditions have realized the greatest increases. Often, these students require the closest consideration for appropriate accommodations and the greatest amount of time to collaborate with offices and colleagues throughout campus as well as external experts and parents.

There are additional demands on student disability offices that fall under the responsibility of the ARC. These demands are making an impact on staff time and the need to update their areas of expertise. For example, students with temporary conditions (e.g. broken dominant hand, concussion) require the support, time, and resources of the ARC. There is an increase in graduate students with disabilities. These are students who have received services and accommodation in their undergraduate schools and expect continuation. Students with disabilities taking online classes present additional challenges to the need to provide web-based access. On the rise are students requiring housing and dining accommodations. Last year 132 students requested medical housing. In addition to living spaces that accommodate physical disabilities, there are more requests for medical singles, or carpet free and/or air conditioned spaces for students with allergies. Legal changes affect the definitions for service animals and comfort animals and students are increasingly requesting these accommodations. In order to consider student requests, ARC staff must also understand how the Fair Housing Act and Housing and Urban Development (HUD) Section 504 apply. These changes, in turn, increase the need to collaborate with other campus offices and the time to thoughtfully consider documentation. 

A closer look at Georgetown University and disability issues

There is an impressive awareness of disability issues by some Georgetown University administrators. The Disability Working Group is a source of collective information positioned to inform the University and the ARC. Georgetown's students with disabilities are an articulate and appreciative group who can provide the thoughtful user perspective. University health insurance covers the costs of, at least, some of disability testing. Dr. Holahan and the ARC were consistently cited by all stakeholders as the campus experts on disability issues, laws, and support for students. This praise was uniformly accompanied by awareness that the staff and resources were challenged by the increasing demands. This sometimes led to reluctance to contribute to this imbalance with yet another question or request. We were told that "we worry about so much work for one small office." However, this concern is counter-productive to the support of students and education of the University's staff and faculty.

The ARC's location and lack of space (addressed in more detail later in this report) was another repeated concern throughout the two day review. Beyond the problematic physical setting of the ARC, there are additional accessibility concerns. There is a lack of campus signage to direct current and prospective students and visitors, especially those using a wheelchair or crutches, to the disability office in The Leavey Center. Current construction further complicates directed travel and there does not appear to be additional guidance around construction for individuals with disabilities. Finally, understanding the ARC's resources on the University's website is as difficult as finding its physical office location since its main webpage lacks the department's name as its headline and clear articulation of its three-pronged student focus. 

The imbalance that exists between legitimate demands on services and the resources to meet those needs inevitably leads to unintended neglect. We heard concerning scenarioes of student situations, including the experience of a deaf student who could not access a campus event that did not have an interpreter. Faculty are often unaware of policy and students have been in the uncomfortable position of educating their educators. Concern about Georgetown's support for its students with disabilities was summed by one adminitsrator, "At a university that prides itself on excellence, we are just meeting compliance." In February 2015, a report was written by the director that outlined similar concerns and recommended staff adjustments. Our recommendations build upon and expand this proposal.

Recommendations for support for students with disabilities includes the following:

1) Increase the staff and refine  current positions in order to meet federal guidelines and the ethical obligations to provide access and support for students with disabilities so they can participate in the same postsecondary experience as their non-disabled peers. 
Refine the current responsibilities of the Associate Director for Student Disability Services who should focus solely on the coordination of services for students with temporary conditions, chronic health, and physical disabilities, including sensory impairments and mobility-related disabilities. In addition to individual work with students, this position should consult and coordinate with Housing, Dining, Student Health Services, and Event Planning. Moreover, this individual would coordinate all accommodations for deaf students, including Gallaudet students taking courses at Georgetown University. 
Rationale: These responsibilities are among the most time consuming and include areas of current and anticipated growth. This position would provide time for the Director to supervise a very complex work environment, set policies, stay current on legal changes, and represent the ARC throughout campus. Both the Director and Associate Director for Student Disability Services could (and should) continue to work directly with students because this is one of their strengths and also to keep their pulse on student challenges and issues. 
Presently, the Director is working 12 hour days to fulfill the needs of the ARC. We heard repeatedly that the ARC is "understaffed" and that the workload is "staggering." An additional concern in that the Director is a wealth of institutional knowledge, but there is no succession plan built into the organization of the ARC. 
Hire a Learning Strategies Specialist for Students with Disabilities to provide individual appointments, programming, and online workshops on university relevant skills such as academic reading, writing, time management, and study strategies for students with disabilities based on the students' documentation and their expressed academic needs. These responsibilities are currently being only partially filled by the Associate Director.
Rationale: Learning support will include instruction on academic skills and study strategies that can increase independence and self-sufficiency. Comprehensive support goes beyond legal requirements to support the whole student within the academic and extracurricular settings. Presently, the ARC staff can provide some of this support, but we heard that it was often "rushed" and not always available. This is clearly due to demand, not the skill set of the ARC staff.
Hire an Accommodations Coordinator to schedule, coordinate, and oversee the increased number of accommodated exams, special technology needed in the exam situations, note-taker accommodations, and e-text oversight.
Rationale: These tasks have become the responsibility of the Coordinator of Administrative Services whose primary responsibility is the management of the ARC, including scheduling services and programs and the multitude of support needed for this complex office. It is clear that the ARC needs a full-time individual in each of these positions.
Hire Graduate Students with experience and interest to assist with learning support, facilitation of workshops, tutor training, and coordination of exams during peak exam periods. These positions should be permanently build into the budget, rather than accessed during time of staff vacancies.
Rationale: With training and support, graduate students can contribute additional energy and ideas, as well as instructional assistance. This staffing structure also supports graduate education and promotes interest in a field sorely in need of future leaders.
In addition:
Revise the position of Disability / Learning Skills Advisor to full-time at the town campus to better support the growing number of students with disabilities, adult learners and online courses that are associated with that campus. Specific time should be allocated for meeting and connecting with ARC staff on the main campus.

2) Provide education and training for faculty, teaching assistants, resident advisors and others who work directly with students with disabilities. While it is difficult to require faculty education, this should be a clear mandate from Georgetown Administration. Faculty should be encouraged to include syllabus statements that describe the ARC as the resource for students with disabilities and the location for academic support for all students.

Rationale: We learned from students that they were often in the uncomfortable position of educating their instructors. Faculty should be aware of legal requirements and University policies and procedures for supporting students with disabilities. Through programming and print and web-based materials, faculty must be made aware of the ARC as the central department for the self-identification of students with disabilities and the determination of accommodations. This will insure a consistent process as reqiured by law. They should also be provided with information on correct terminology to replace language that is offensive to students with disabilities (e.g. "wheelchair bound").

3) Provide signage that directs prospective and current students and visitors to the ARC, with clear indication that it is the location of disability services. Within the Leavey Center (or future location), provide directional signs to the ARC.

4) Provide the ARC with a database to coordinate scheduling of appointments and accommodated exams, as well as a notes system to track accommodations and a student's activity record with the ARC. The volume of accommodations and the flexibility and planning required to implement these accommodations can be managed better with an online service and it also will improve student accountability for requesting accommodations. The ARC staff has requested "Clockwork" which may fulfill some, if not all, of these recommendations. Provide technology for administrative efficiency and contemporary methods of communication. Presently, letters to faculty informing of a student's disability accommodations are presented to them by students on carbon copied paper.

5) Develop a liaison system with representation from key academic undergraduate and graduate programs. 

Rationale: This is necessary in order to strengthen ties with individuals who are advising students, to inform departments and programs of law, policy and procedures, and to offer consultation support. This is already done informally, but not consistently. The liaisons should meet, as a group, at least once a semester with ARC administration.

6) Convene a committee, including the ARC Director, to investigate the accessibility of institutional websites, courseware, and online course materials.

Rationale: More course and research material is available through online print resources and video. Also, there has been an increase in online courses. The OCR, DOJ and advocacy organizations such as the National Federation of the Blind are scrutinizing these resources to insure that they are accessible for individuals with a variety of disabilities. Again, it is also the ethical obligation to make educational materials available to all.


Services for Student Athletes

Student Athletes have a unique experience at universities in that their identity as athletes is comparable to their identity as scholars. Their time commitment to the sport is essential to their existence in college and they are expected to deliver on the field, courts and facilities as well as in the classroom. Their personal experiences, history, family challenges, etc. mirror the complexity of the student body. In general, research and literature on the student athlete experience suggest that academic support and counseling must also take into account the involvement of coaches, compliance officers, trainers, teammates and others who are intimately involved in the daily life of student athletes. Communication between all the parties, ongoing monitoring of students to identify academic needs, referrals to the counseling center, wellness programs, leadership and career development and general academic support are all essential components of an effective student athlete support network. A recent review of academic support programs by Navarro and Malvaso (2015) suggest that student athlete development is best approached by an integrative approach where student athlete programs co-exist with other services such as the approach at Georgetown supporting the overall student engagement. Placed within an academic support office in the division of student affairs seems to be consistent with best practice for an objective holistic approach, as outlined by Navarro and Malvaso.

At Georgetown, there are 27 athletic teams encompassing 846 varsity student athletes which is approximately 10% of the overall student population. The staff who support these students are housed within the ARC and includes an Associate Director, Shelly Habel and an Academic Coordinator for Women's Basketball, Adam Polacek. Within the Athletics Department there is an Assistant Director for student athlete development who manages the NCAA expectations for wellness programs and other compliance issues as well as all matters related to Men's basketball. Study halls are run by coaches. 

While the ideal situation would be for all student athletes to find an array of services at the ARC to nurture their student athlete experience, the reality is that simply ensuring that all 700 students remain in academic compliance is a challenge due to this limited staffing structure. The one associate director is responsible for meeting with students to discuss their academic needs, coordinating of proctoring exams for 25 teams when students travel as well as providing academic monitoring for students. The overview outlined by Shelly Habel describes the array of services provided and the challenges the office has in trying to meet the growing complexity of demands. A minimum of all first year student athletes should have close communication but this is not possible. Currently, coaches have recommended that 120 first year students, as well as 39 students who are on probation meet regularly with Shelly. Due to the sheer number of students under her purview, she can only monitor those who are previously identified as at risk. While she would prefer personal interaction, she has had to use text messaging in lieu of face to face meetings in order to be more efficient and expeditious with students. Progress reports are not consistently sent to faculty of all sports, only those for students who are at risk. The inability to outreach to all faculty limits the support and promotion that the majority of student athletes need. A minimum of all first year student athletes should have some check in with their faculty; however, this is not possible with the current structure. Overall, it is questionable whether Shelly's approach to supporting students via text and engaging primarily with those who are at risk is consistent with a Jesuit approach of cura personalis. Indeed, it is a minimalist approach in order to manage the large volume of students and their complex needs. 

The tutorial support provided to student athletes is coordinated by the ARC staff however they are challenged due to limitations on tutors in a variety of subjects. We heard of the process taking several weeks to hire student tutors, limiting the ideal academic impact on the student athletes.

The academic coordinator for Women's Basketball is focused entirely on this one team, often traveling with the team to proctor exams and offer academic support. All of his time is focused on the success of the women's basketball team and therefore he is unable to offer any additional support to other sports. The men's basketball team advisor reports to Athletics. Several of the community members suggested that this sends mixed messages regarding the academic focus of these two teams. The value of a focused approach is individualized attention for the students on these highly visible teams. The challenge however, is that they are isolated and may not be receiving the holistic Georgetown education if they are so limited in their scope.

The NCAA required Life Skills program, which includes programming on the five pillars of academic excellence, athletic excellence, personal development, career development and community service is coordinated through the Athletics department. While this ensures student athlete participation, the student affairs departments who specialized in these life skills and in particular the ARC are not integrated with the programming. Georgetown's goal of providing a quality education may be limited when the life skills programming and academic support are not aligned as students learn best when they are able to experience the connections between the various aspects of their college experience.

Despite the limited staffing, the department has been successful with helping students maintain academic compliance. Shelly reported that the numbers of student athletes in a given year who find themselves ineligible are very low (less than 5 per year) with the exception of basketball. Further, she indicated that one third of student athletes make the Dean's list and several teams have an overall g.p.a. of 3.4 or above. Adam indicated that 5 women's basketball players had a 3.0 last year and received Big East All Academic Honors. Priority registration for student athletes on the basketball teams and special workshops for football players, are strategies which have helped to maintain compliance and academic success for student athletes.

Academic support is an important factor for prospective student athletes and therefore availability for recruiting meetings is also a necessary role that the advisor to student athletes must play. In this case, Shelly meets with prospective students and their parents in football, soccer, volleyball, lacrosse and track. Each of these teams has significant numbers of students, requiring a fair amount of Shelly's time.

Feedback from colleagues of the ARC reported that while the department works extremely hard, they must rely on colleagues to reach their goals. The advising deans and others in the division of student affairs are able to provide support for students who tend to fall above the "at risk" status, yet need additional support.

Recommendations for support for student athletes includes the following:

7) Increase the staff by one full time Academic Counselor in order to provide an integrated experience beyond mere compliance for student athletes. Comparable universities such as American, Duke, Villanova, Boston College, University of Pennsylvania, and Fordham University have between 3 and 7 professional staff members to support student athletes. These offices also engage students in laedership development, counseling, career development, and tutorial support specifically for student athletes- far beyond a compliance-only model.

8) Co-locate all the staff in the department so that they are able to consult, share resources and bring the women's basketball team in closer connection with other student athletes. Currently the separation of offices and space isolates the team and limits the natural engagement opportunities that can occur when these students are physically isolated from other resources.

9) Improve the policies and practices for hiring tutors. Students often are not aware of the need for tutorial assistance until mid-semester, yet it becomes challenging to hire tutors at that time. A review of the hiring policies and practices may identify changes that can improve the experience of acquiring a tutor and lead to greater academic success for students.

10) Utilize technological solutions for academic monitoring of courses so that more students can be monitored before they are at risk. Also, technology can improve the process for requesting tutors to reduce the time to acquiring a tutor

Academic Support 

The ARC website indicates support in three categories: Disability Support; Student-Athlete Support; Academic Support. It invites students who want to improve their academic skills such as note-taking, test-taking and time-management to "take advantage of the resources" of the ARC. Such academic support is warranted for talented university students whose approaches to learning and studying should match the challenges and opportunities of the curriculum. However, the ARC's lack of space and staff has led to the prioritization of students with disabilities and student-athletes over other students in the Georgetown student body. During our meeting with various stakeholders, especially faculty and Advising Deans, we learned of specific cohorts of students, who would benefit from individual academic support with a learning specialist. These include international students, STEM students, individuals from under-resourced high schools, graduate students, and those students who "never had to study in high school." The ARC stats have also noted a significant increase in students as a result of the growth of the School of Continuing Studies, including online at the undergraduate and graduate level. There appears to be a lack of outreach that would invite students to engage with the ARC and normalize the use of academic support. It was also suggested that the knowledgeable ARC staff could be more fully utilized as ongoing direct support to Advising Deans, not only during times of student crisis.

Recommendations for Academic Support:

11) Hire a Learning Strategies Specialist to work with undergraduate and graduate Georgetown students on university-relevant skills that support their work across disciplines. Provide an array of supportive services for the diverse undergraduate and graduate student populations to support Georgetown's commitment to the cognitive and metacognitive growth of their students.

12) With the input of students, develop outreach through print materials and social media with the objectives of informing students, faculty, staff, prospective students, and parents about the resources of the ARC and diminishing the stigma of academic support.


Space and Location

Across all stakeholders, the ARC's space, located in the Leavey Center, was described as inadequate, embarrassing, and deplorable. The students underscored the problems from a user's perspective. The ARC is not wheelchair friendly which is disconcerting since it is the location of disability services for students. Office space is inadequate to house all the staff who should be working together. Since increased staff is needed for the ARC, there will not be enough space in the current location

The ARC is difficult to locate, both geographically and on the University's website. Although its location in the student center would seem ideal, it lacks the visibility of other major offices such as the Career Center. There is a scarcity of campus signage to direct students and visitors, especially those using a wheelchair or crutches, to the disability office in the Leavey Center. Current  construction is reason for even more directional signs. Once inside the building, there is a lack of indicators. Additionally, locating the ARC on the Georgetown University's website brings up a descriptor page with "Academic Resource Center" hidden among the text.

The room for accommodated testing, located on a different floor of the Leavey Center, can only accommodate nine students. Its location as separate from the ARC is problematic in that the ability to proctor exams is limited. Additionally, staff cannot fit in the room to observe and there is no technology to provide oversight. The room was described as a "former closet" and "claustrophobic." It lacks ventilation, becoming unpleasantly warm. Noise from the hallway contradicts the accommodation of a "distraction reduced setting." With increased numbers of accommodated exams, ARC staff must often vacate their offices to provide additional testing areas. When an accommodation is not fair and equal, students may file complaints. The testing space should meet determined accommodations in terms of quiet, lighting, and ventilation. It should include ample space for proctoring.

Recommendations concerning space and location:

13) Relocate the Academic Resource Center to a setting that includes enough offices to comfortably house ARC staff, student spaces, program areas, conference room and administrative areas for reception and workroom. The location should be easily accessible and in a well-traveled area of the campus. The ARC Director and staff are the best determiners of particular space needs. 

14) Work with University architects to create and install appropriate directional signage to the ARC's location. Other accessible expectations such as braille on the elevators and accessible restrooms should also be a priority. 

15) Create a Testing Center in close proximity to the ARC. Consider lighting, adjustable desks, and technology (including assistive technology). Build this center to accommodate future needs by considering five-year trends and benchmarking other institutions that have built areas for accommodated testing.

References

Navarro, K. & Malvaso, S., (2015) Synthesizing Research on the Contemporary Student-Athlete Experience: implications and recommendations for NCAA Student Athlete development programming. Journal of College and Character, 16:4, 263-269, DOI: 10.1080/2194587x.2015.1091358

Grossman, P.D. & Smith, E.J. (2015). Five Things Student Affairs Professionals Should Know About Disability Law. Washington, D.C.: NASPA Foundation. 











04 April 2016

Hello, internalized ableism

Content/TW: Internalized ableism, passing for neurotypical, not passing for neurotypical.

Hello, internalized ableism

I don't believe in the ableist, classist hierarchy that treats autistic people as "legitimately autistic" only if they have an on-paper diagnosis while other autistic people are treated dubiously and with suspicion if they self-identify without (obtaining) an on-paper diagnosis. That hierarchy privileges the medical/psychiatric-industrial complex as the sole arbiter of autistic identity and experience. (In other words, only considering someone to be a "real" autistic person if they have a paper diagnosis means that you believe that only medical/psychiatric professionals can define who counts as autistic.) That hierarchy also privileges those who have class privilege, especially compounded by other forms of privilege. Class-privileged white people, for example, are more likely to have the resources necessary to access a paper diagnosis, than lower-income people and people of color, and especially low-income people of color.

Others have written extensively on the issue of privileging paper diagnoses and marginalizing self-identified people, most famously in the letter "Who Can Call Themselves Autistic?" penned more than ten years ago by some of the greats in the autistic movement. I won't linger long on that topic of conversation.

I wanted to preface this post with that caveat on diagnosis and self-identification because I'm starting my story here (and I'm unapologetically autistic in the way this story unwinds, which is to say, it's both extremely linear, logical, and intuitive all at once, and not at all):

I received a paper diagnosis through a neuropsychological evaluation when I was in eighth grade. (At the time the label used in my evaluation was "Asperger's" but I identify myself as autistic because I believe in creating solidarity among autistic people rather than reinforcing artificial divisions between autistic people based on ableist ideas about which types of autistic people are acceptable or desirable versus not.)

From the time I was a small child, I never quite fit in with other children my own age, whether with other Chinese American children or with children in my classes or with children in my childhood church. I was painfully slow on the uptake when figuring out that people I thought were nice to me or were my friends were actually treating me like shit.

But somewhere between the time I received the autistic diagnosis and now, I had fallen into a kind of complacency in my young adulthood (I'm in law school now) as a disability activist about my own disabled identity and experiences. From believing that autism was something to be ashamed of (and that would result in my classmates bullying me even more if they found out) to actively organizing protests against organizations like Autism Speaks for eugenicist cure rhetoric, I've now settled comfortably into a role as a Professional Activist TM.

(What is a career activist anyway? How horrifically has the nonprofit industrial complex injected social movements with white supremacist capitalism?)

Part of my work nowadays brings me across the United States to speak at colleges and conferences and with all sorts of other groups interested in anti-ableism training. I talk about privilege a lot and one of the types of privilege that I discuss is passing privilege -- maybe better termed "being less fucked." I talk about hidden disabilities versus apparent disabilities, and how sometimes, a particular person might be apparently disabled but at other times they're not. (Someone who uses a wheelchair might not be apparently disabled while lying in bed. Someone autistic might not be apparently disabled in a still photograph taken when they weren't stimming. These are still maybes and don't account for more complicated experiences.)

I use myself as an example, especially in casual conversation. I tell people that I generally pass for neurotypical and that to most people, especially those who aren't terribly familiar with autistic people, my disabilities are fairly hidden.

(Maybe sometimes I'm giving this long introduction or caveat for my own existence as a way of trying to navigate the double bind we're often placed into as disabled people -- if you're "high-functioning" you can't speak for the really disabled people; if you're "low-functioning," those must not be your ideas at all! -- and avoid the accusations that I'm a not-really-disabled person profiting off of "really" disabled people.)

But lately, I'm coming face to face with the realization that I'm wrong about whether, to what extent, and how often I pass for neurotypical. I'm realizing that even if I don't identify myself as disabled or autistic, other people still read me as "different" and that as much as my gender identity, (a)sexuality, and race might contribute to that perception, my disability is an inextricable part of the equation. Years after receiving a paper diagnosis and winding my way through layer after layer of educational privilege where I thought I might be perceived as somewhat weird but not fundamentally deviant, I find that other people still intuitively peg me as some kind of neurodivergent (whether or not they know that word) and often attach negative aspersions to that perception.

And frankly, that's scary.


Photo: Young east asian person (Lydia Brown) in pale green pantsuit standing to ask a question in a room full of seated people, some of whom are also disabled in various ways. From the first White House event on the intersection of LGBTQI and disabled experiences in June 2014. Photo by Patrick Cokley.

It's scary, sure, because it means I could face discrimination I didn't think I might have to deal with (being relatively less fucked if able to pass for not-disabled), because it means I could be read more easily as a target for potential violence (given the rates of all forms of violence against cognitively and developmentally disabled people, especially those read as feminine or women), because it means I am more visible than I realized and visibility itself also means violence.

But it's also scary because I'm becoming intimately acquainted with my own internalized ableism in all the little dark crevices in corners of my mind I forgot existed and haven't thought to check, and I can't shake the immediate thoughts that I should try harder not to seem so autistic in public or else what am I doing wrong that other people can tell? Essentially, I'm finding that my reactions to this ongoing realization of just how much my neurodivergence shows are that there is something wrong and that I should feel ashamed and self-conscious if (non-autistic) people can tell that I'm autistic. For all the time I've spent in conversation with other disabled people -- and autistic people in particular -- about ableism and neurodivergence and neurodiversity and radical disability, I have never stamped it all out.

We build cultures of perfection in activist spaces. This is not unique to autistic or disabled spaces. Purity politics pervade activist and social justice spaces. Call-out culture demands that in the rush to create safe spaces, we shut people out and throw them away if they fuck up once. (This is not about forgiving privileged people for repeatedly entitled or outright abusive behavior targeting marginalized people. This is about disposability politics.) We're constantly competing for limited resources ("likes" and "reblogs" and "retweets," all the twenty-first century trappings of social capital -- and that word "capital" is critically important), trying to be better activists, always on, always saying the right thing. We give pithy acknowledgements of privilege and past ignorance/fuck-ups, but functionally act as though in the present time, we no longer fuck up because now we're Educated. That it is our duty to jump down each other's throats at the slightest mistake or misphrasing -- ignoring the completely classist, racist, and ableist implications of expecting people to always say the right thing and never accidentally say the wrong thing or not know the correct terms.

All we've done is replicated the painful violence of white supremacist, (cis-hetero) patriarchal capitalism in supposedly revolutionary, transformative, liberatory spaces.

All we've done is take the practices we find harmful and do the exact same things to each other.

We've created activist cultures where it is not acceptable to talk about ongoing struggles with internalized ableism, yet we expect autistic and other disabled people doing disability movement work to be politically perfect (that is, to have no traces anymore of any internalized ableism.)

We have created a mirror image of the "overcoming" supercrip/inspoporn narrative we all hate:

Ambika was diagnosed with autism, but she went to social skills class and occupational therapy and tried so very hard to succeed despite autism and now she's in medical school and has overcome all of the autism-related deficits that predicted she would never make it this far! 

Now we have a different "overcoming" story and it's just as toxic:

Ayodele was an autistic teenager when he first met autistic neurodiversity activists, and then he started going to anti-Autism Speaks protests and local ASAN chapter meetings, and writing his own blog on Tumblr and now he's working for a national disability rights organization and has overcome all of his internalized ableism from being in the self-contained special ed classroom! 

Yet no one seems to notice the painful irony of exactly how similar these narratives are -- though we condemn one and exalt the other.

So where are our spaces where we can heal not just from the trauma inflicted on us by others but also from the ongoing trauma we inflict on ourselves? Where can we be vulnerable, truly vulnerable, without fearing the consequences of enforced ostracism from "safe spaces" that privilege an ableist facade of having-it-together and overcoming-internalized-oppression?

So here I am, feeling very much at the edge and isolated from most autistic spaces these days, trying to reach my tendrils through dark corners of webspace in the hopes of reaching those of you who, like me, are struggling to uproot our own internalized ableism while maintaining the public facade of impenetrability.

Hello, internalized ableism. I don't miss you and I don't like you very much at all. 

Hello, internalized ableism. You seem to be very comfortable inside my mind, but I think it's time for you to start packing and moving out -- for good. 

Hello, internalized ableism. You know me far, far too well. You're hardly a stranger here. 

Hello, internalized ableism. You're living in my brain and I can't ignore your presence anymore.

22 March 2016

Disability cannot mean "white disabled people" only.

This is testimony that I delivered at the Massachusetts State House today on a bill that would create an Office of Health Equity in the state government. Also available in PDF.

Photo: A Latina advocate from the mental health community speaks publicly during the Disability Advocates Advancing Our Healthcare Rights forum (January 2016) while others listen and an east asian person (me) holds the microphone for the person speaking. Photo by Boston Center for Independent Living.

***

22 March 2016

Rep. Jeffrey Sánchez, House Chairman
Sen. James T. Welch, Senate Chairman
Joint Committee on Health Care Financing
Massachusetts State House

Dear Committee Members:

Thank you for allowing me to testify today. My name is Lydia Brown. Some of you may already know me, as I seem to have made Beacon Hill visits a dedicated hobby. I am a disabled advocate and community organizer; I am also an East Asian person of color, queer identified, and gender non-conforming. In Massachusetts, I am chairperson of a statewide disabilities council and co-president of TASH New England, the regional chapter of an international disability rights organization. Nationally, I serve on the board of the Autism Women’s Network.

From both personal and professional experience, I am keenly aware that healthcare disparities are one of the most insidious and pervasive forms of discrimination impacting any underrepresented or minoritized group. These disparities are evident in quality of care, diagnostic accuracy, network adequacy, service delivery models, multicultural competency, and overall health outcomes. These disparities result in lower life expectancy, less access to any healthcare including mental health services, and other deleterious effects on well-being and social stability.

Today, your committee will hear testimony on a bill – S-1114 (An Act to eliminate health disparities in the commonwealth) – that seeks to address and remediate health disparities in the Commonwealth by establishing a dedicated state office on health equity. Such an office could serve as a critical starting point in identifying specific sources of inequity affecting Massachusetts residents, especially those impacting whole populations, and then addressing those systemic issues.

This bill should be reported favorably from committee, but if and only if it is amended to be stronger than the existing bill (H-3969 / S-2143, An Act eliminating racial and ethnic health disparities in the Commonwealth) that has already been passed to be engrossed

The language of S-1114, the bill before you today, is much weaker and rather concerning compared to the other bill. Specifically, this bill identifies “race and ethnicity” and “disability status” as separate determinants (or people of color and people with disabilities as separate groups) associated with health disparities:

Ex. 1 (definitions)
“Health disparities”, differences in the incidence, prevalence, mortality and burden of diseases and other adverse health conditions, in the access to or receipt of health care, or both, that disproportionately affects certain racial and ethnic groups, as determined by the office, and people with disabilities.
Ex. 2 (statutory mandate)
The office [of health equity] shall also consider and make recommendations regarding subpopulations among racial and ethnic minorities and people with disabilities that experience the highest levels of disparity in health and health care.

The other bill (H-3969 / S-2143) that has already been passed to be engrossed, states instead: 

Ex. 1 (definitions)
“Health disparities”, differences in the incidence, prevalence, mortality and burden of diseases and other adverse health conditions, differences in the access to or receipt of health care or both such differences that disproportionately affect individuals based on race, ethnicity, gender and disability status.
Ex. 2 (statutory mandate)
The office [of health equity] shall also consider and make recommendations regarding individuals that experience the highest levels of disparity in health and health care based on race, ethnicity, gender and disability status.

That bill as amended is significantly stronger and more promising than S-1114 because it attempts, however potentially ineffectually, to acknowledge that a person may be impacted by membership in more than one minoritized group, and to attempt to focus the office’s resources on such people.

Nevertheless, both bills require substantial changes in order to fulfill their intended purpose of identifying and addressing healthcare disparities. Both bills can and should be strengthened by adding language that does not merely list various categories of minority identity, but that acknowledges the particularly pernicious effects of compounded systemic inequalities. (The new bill lists race, ethnicity, and disability as possible factors; the existing bill lists race, ethnicity, gender, and disability. Some possible additional characteristics might include limited English proficiency and sexual orientation.) 

As a disabled and gender non-conforming person of color, I understand disability issues as neither separate from nor competing with racial or transgender issues. The healthcare outcomes of white disabled people differ from those of disabled people of color; those of transgender people of color with disabilities differ significantly from those of non-transgender white people with disabilities. This new bill, S-1114, speaks of people of color and people with disabilities as though we comprise two separate constituencies; this could not be farther from the reality that we face. 

We must focus on race and ethnicity as sources of continued discrimination and systemic disenfranchisement in healthcare, because people of color continue to experience appallingly ordinary discrimination in healthcare settings. Look no further than the numerous studies showing that people of color, especially Black people, are taken less seriously when complaining of pain than white people. This does not in any way whatsoever undermine the reality that LGBTQ people and disabled people experience often severe discrimination in healthcare. 

We have research demonstrating that doctors are more likely to make more rapid life or death decisions on risky procedures if the patient has a developmental disability, including denying eligibility for organ transplants without any medical reason. We know that disabled people of colors and LGBTQ disabled people have been more likely than others to be denied sex education or worse, subjected to forcible sterilization. We know that the transgender people least likely to be able to access gender affirming healthcare are transgender people of color and transgender people with disabilities. 

Thus, we cannot afford to conceptualize categories of difference as mutually exclusive. Disability cannot mean white disabled people only. Race cannot mean non-disabled people of color only. Gender cannot mean non-transgender women only. I cannot settle for a bill that not only seems to pit my communities against each other, but which could also lead to further disparities by focusing desperately needed resources only on the most privileged members of my communities. 

An effective health equity office can only fulfill its mission of identifying and ameliorating healthcare disparities if it is equipped with an explicit statutory mandate to address those most impacted by multiple systemic inequalities. That mandate must be fulfilled through 

(1) ensuring that the office’s administration, internal leadership, and community engagement activities are of, by, and with members of the directly impacted communities at all levels; 

(2) enumerating multiple categories of minoritized identities (starting with race, ethnicity, gender identity, and disability) as many possible bases for health disparities that do not exist in isolation and that compound one another, and explicitly creating a particular mandate to focus on health disparities affecting people impacted by multiple minority experiences, who are not subpopulations but specific underrepresented populations;

(3) ongoing multicultural competency training for all of the office’s leadership and staff on sexual orientation, gender identity, race, disability, and other minoritized identities; and

(4) sustained partnership with organizations led by and for minoritized communities, especially those led by people with multiple minority experiences, that are already addressing healthcare disparities from the ground up. 

These bills both contain much promise, and I urge this committee to work hard to ensure that, through all necessary amendments, those bills are in the best possible position to keep that promise for those of us most impacted by compounded inequalities. To that end, I am happy to work with interested members of this committee and others in the legislature on amendments to S-1114 or to H-3969 / S-2143. Thank you again for your time and consideration.

Sincerely,
Lydia X. Z. Brown

11 February 2016

Disabled people are not your feel-good back-pats.

Anyone who watches Orange is the New Black remember the cringe-worthy Caputo episode? (S3, E11. "We Can Be Heroes." Yep, that's the title of it. And no real spoilers ahead in this post for people who didn't watch Season 3.)

So the whole drawn-out thing is an exercise of Caputo (terrible prison administrator who is for probably horrible patriarchal, misogynistic reasons portrayed as the not-as-bad-guy, for the non-fans) trying to prove that he's a decent human being (spoiler alert: he's not). Maybe the producers/writers/whoever wanted him to seem human and relatable. The theme revolves around this line that keeps coming up, that he's always holding doors open and upset when no one thanks him. (Reminiscent of the MRA core belief that politeness and everyday decency toward women somehow create a right to sex with them.)

The opening flashback takes us to Caputo's high school years as a varsity wrestler. Stereotypical high school star athlete, captain of the team, that whole shebang. The coach has the team huddled together before the meet, and tells them that one of the wrestlers among them has taken one for the team and volunteered to do an exhibition match with this student from another high school. The coach tells them the other student has always dreamed of being a wrestler and now his dream will come true. The coach reveals that the volunteer is their team star, young Caputo, and calls Caputo a "real hero." Caputo, smiling, says, "I'm gonna make him feel like he's really doing it."

Here I am watching this, already cringing, about 99.99% sure I can already predict exactly what's about to come in the next shot.

BAM. Now Caputo steps to the ring, along with another high school student, also in wrestling gear. The announcer introduces them as "two very special wrestlers" before giving their names to the audience. The student from the other high school, predictably, has Down syndrome, a now easily recognized apparent disability.

Typically, the story ends with the non-disabled participant "heroically" letting the disabled person (usually a person with an intellectual or developmental disability) win. The underlying assumptions, of course, are that (a) disabled people are incapable of winning or even competing alongside everyone else because we are automatically not good at anything ever, and (b) disabled people lack awareness of reality so much that we can't tell when others are patronizing or condescending. In OITNB, the plot takes a different turn. Kendall Barnes (the student with Down syndrome) turns out to be so strong and physically powerful that he injures Caputo badly enough to prevent Caputo from ever competing again.

Sadly, as those of us in the disability world know well by now, these stories don't flit about only on the silver screen. They're also everywhere in our mass media and social networking. Sometimes they're posted with clickbait titles -- "You will cry after watching what this wrestling jock did for a special needs kid." "Tear-jerking video of girl with Down syndrome singing special song with local choir." "5 heart-warming stories about everyday good deeds from the kids in the autism classroom down the hall." "What this prom king did for special needs classmate will restore your faith in humanity."

(Ugh, now that I've typed these out, as in actually, legitimately, typed them out, I'm going to go vomit. Be right back.)

Stella Young, the late disabled activist as known for her wit and sharp analysis as for her snazzy outfits, called this phenomenon "inspiration porn." Many of us call it inspoporn for short. It refers to the omnipresent trope of stories that tend to fall into one of three categories:

(1) Disabled person does something extremely extraordinary (climbs Mt. Everest, is elected to a country's highest governing body, publishes New York Times bestseller, etc.), and it's presented as inspiring because the person is disabled, and not because 99% of the total population (disabled and non-disabled) could have never achieved it.

(2) Disabled person does something pretty mundane for most people (graduates middle school, plays in a basketball game, bakes cookies, etc.), and it's presented as inspiring because apparently disabled people are assumed to be incapable of doing ... anything. At all. With or without adaptive equipment. With or without practice and instruction geared to their learning style.

(3) Non-disabled person does something not overtly negative or generally shitty to disabled person (doesn't call them names, invites them to a birthday party or a prom, doesn't discriminate against them during a job interview, etc.), and it's presented as inspiring because LOOK AT THE MAGNANIMOUS, KIND-HEARTED (non-disabled) SAINT BEING NICE TO A PERSON SUFFERING FROM A DISABILITY. (*language intentional)

(Note there is often a racial component to these stories too: white disabled people and or white "helpers" present more easily accepted caricatures of saintly, angelic, heroic, courageous, inspirations.)

In other words, inspoporn is a collection of overcomer, supercrip, and saintly helper stories. The common undercurrent to all types of inspiration porn, however, is the disabled person's role in the story. Instead of being an individual character, fleshed out and made fully human and at least potentially relatable to the reader/viewer, the disabled person (or disabled people, if there's a group) exists as a prop for the non-disabled person in the story. The disabled person's existence serves as edification for the non-disabled people around them, or as a moral yardstick to measure whether the non-disabled people (the ones who are relatable as main characters to the presumed non-disabled only audience) are sufficiently good tolerant people who are minimally not shitty. This is not the same as being actively anti-ableist, by any stretch of the imagination.

Ari Ne'eman, Autistic Self Advocacy Network co-founder and president, describes the third category of inspoporn as Very Special Episode syndrome -- where a disabled character is newly introduced for one or a few episodes of a long-running series (in a book or film, this could easily be adjusted to a single chapter, single scene, or background plot) to teach the main characters (of course not disabled themselves) a very important lesson about tolerance before going back to the institution or special needs school where they "really belong."

So you can imagine my dismay when I came across this post in a law school's Disability Law Society social media page:



Photo: From a Facebook group for a Disability Law Society, a link to a news article. The original comment is, "This is what a true leader looks like :) [smile] " The article title is "Norton High School wrestler allows for dream win," and its description, "A high school wrestling champion is undefeated no more after answering the call to make another wrestler's wish come true." The photo shows two smiling young white people, one without an apparent disability (Deven Schuko) and the other a person with Down syndrome (Andy Howland), both in a gymnasium with wrestling championship banners. I commented below, "This is inspiration porn. This kind of patronizing story treats disabled people as objects of pity who don't understand if we're not "really" winning so we can make non-disabled people feel good about themselves. We don't need heroes or saviors."

This is not leadership. This is self-gratifying ableism. This is objectifying the young man with Down syndrome. This is infantilizing the young man with Down syndrome. This is placing this non-disabled wrestler on some kind of magical pedestal for participating in an inherently condescending activity that presumes incompetence on the part of the young man with Down syndrome and heroics on the part of the non-disabled wrestler. This is focusing the narrative on the person without a disability so the readers can laud him as a hero and a savior. This story is not about leadership. It's about pity, condescension, and cheapened do-gooding masquerading as heroism. It's about tokenism and commodification. It's a story about privilege and power, and the abuse of that privilege and power rather than the intentional use of it.

(Andy Howland lives in the twenty-first century. It's not hard to find out, if he didn't already suspect, that Deven Schuko intentionally lost. And how exactly do you think that's supposed to make Andy feel? Respected? Equal? Bullshit.)

Repeat after me:

Disabled people are not your feel-good back-pats.

Disabled people are not your cheap do-gooder points.

Disabled people are not your good tolerant person moral yardstick.

Disabled people are not your charity projects.

Disabled people are not your community service.

Disabled people are not your emotional commodity.

Got that? Good.

Spending a few hours a week around us, under the assumption that we cannot and do not understand the conversations you have about us, does nothing to challenge assumptions about disabled people. Cloistering us into special programs and exhibition matches does nothing to promote genuine, sustained, meaningful inclusion of disabled people into spaces that should be open to everyone but in reality are only open to a few. Volunteering to ask us on a pity date to the prom, pretending to compete while intentionally losing at a sport, including us once a month or year at your activity or program -- these things do nothing to challenge ableism but everything to perpetuate it. This type of faux inclusion and feigned friendship serve to isolate, stigmatize, and reinforce negative assumptions about disabled people -- assumptions that have incredibly harmful consequences beyond the exhibition match or special prom.

Do you want to support disabled people? Do you want to be more informed, more educated, less ignorant, and less foolish? Then start by paying attention to what we have to say. Start by learning the tools of practicing allyship. Start by assuming that your assumptions are wrong or at the very least, misinformed. Start by questioning narratives that seem to be much more about a non-disabled person's supposed heroics than about a disabled person's humanity and agency in controlling the narrative about them. Start by focusing less on some special one-time event or photo shoot, and more time on the systemic problems in your backyard -- the high rates of bullying impacting students with disabilities, the fact that the school to prison pipeline impacts disabled Black and Brown students more than any other demographic, the high rates of homelessness and unemployment, the overall lack of access to affordable and accessible healthcare especially for rural or queer or trans disabled folks, the consistent denial of access to adaptive equipment and communication devices, the high rates of sexual abuse and killings by family members, the daily torture rituals that many disabled people suffer from in the name of "treatment" and "therapy" and "cure." Ask why disabled people are routinely excluded in the first place such that would-be do-gooders assume our only option is the pity-based special event, and work to change that reality.

Start by treating us as partners instead of projects, and maybe, just maybe, we'll start to get somewhere.


Read more: