Conference Reflection: Disability Access in Health Science Education

Last month, I had the incredible pleasure of attending the Coalition for Disability Access in Health Science Education symposium in Washington, D.C. The MSTP has been incredibly supportive of my journey through medical school with an autoimmune condition, and they actually paid for my registration, flight, and lodging for the conference (THANK YOU, UAB MSTP!). It was an amazing experience that I hope to summarize below.

To do so, I will break this post into a few sections: an overview of the conference and the sessions I attended, two topics that I found particularly important as take-home messages, and my overall impressions / experience in DC. Feel free to skip around as you find best!

 

Overview: Basis for the conference and topics covered

Disability access in medical education is overall a topic that has gained massive recognition and interest in the past few years. As medical providers consider the populations we serve, we are beginning to understand that the role of a physician is not simply to “treat” a disease. Instead, illness is complex; it often affects the way patients are perceived in this world and the way that people can access the materials they need. Medical schools are also starting to recognize the assets that students with disabilities – who have had either helpful or hurtful interactions with the medical system as patients themselves – can bring to our healthcare system so that no one should slip through the cracks.

I have written previously about this topic in some great detail, from UAB beginning to partake in the national movement for recognition of disability and hosting a conference, to my partnership with the AAMC to bring more visibility to the disability experience and emphasize the richness that students who have experienced illness bring to medical schools.

The importance of including trainees with disabilities truly cannot be overstated. Recent data shows that as many as 15% of medical students identify as having a disability, either visible or invisible. Unfortunately, schools are often unequipped and under-prepared to train such a diverse group of physicians. As a result, I was eager to attend this conference and learn more about the movement towards disability inclusion.

I attended the following sessions:

  • Welcome reception and meet/greet with vendors for medical technology devices
  • President’s welcome
  • Keynote 1: Removing the barriers to health science education
  • Legal updates from the national Office for Civil Rights (OCR)
  • Best practices for accommodating psychological disabilities
  • Effects of the hidden curriculum for Canadian medical students with disabilities
  • A medical student’s successful second application for NBME accommodations
  • Faster access for progress: multi-teared system of support (MTSS) program implementation and outcomes
  • Building bridges – best practices for working with administrators and faculty
  • Keynote 2: Improving understanding and inclusion of doctors with hearing loss
  • Panel: Student experiences and views
  • Lots of small breakout sessions and “coffee with colleagues” time in between many of the events

As a whole, the conference was pretty amazing and extremely informative.

I learned more about the experience of hearing-impaired or deaf/Deaf medical professionals.

I heard from other students, many of whom have pioneered new programs at their institutions or even in the state/country that have attempted to better address the mental and health needs of medical students from all backgrounds.

I listened in solidarity as some of the students explained moments in which their disability was singled-out even in the medical school classroom, as other students “studied” their body for their lecture on the complex physiology behind gait/movement.

I also chatted with medical educators and vendors from various medical tech companies who explained some of the new ways they are making education possible for students of all physical and sensory abilities from things as simple as an app on a smart phone.

I wish I could dive explain more about each of these topics. However, for the purposes of this post, I will dive mainly into two issues: the legal discussions currently surrounding disability access in medical education (briefly as background in this context), and calls for a culture shift that extends beyond legal inclusion.

 

Topic 1. Disability access: what does the law say?

For this portion of the conference, we heard from a lawyer who works with the Office of Civil Rights (OCR). I think the first major thing I learned here was, well… the existence of OCR! For those like me who are unaware of OCR: OCR is a sub-agency of the U.S. Department of Education. Their main purpose is to ensure equal access to education by enforcing civil rights laws that prohibit schools from engaging in discrimination on the basis of race, color, national origin, sex, disability, age, and more.

Many of the cases that OCR has recently tackled involve instances in which schools had “blanket policies,” or unstated rules that certain accommodations are “never” granted without considering individual circumstances. Another common topic involved cases in which reasonable requests for deadline extensions or additional time were not granted to students whose physicians supported these accommodations. All of these stories closely mirrored the stories I have heard from so many of my friends over the years. Each time, OCR found that the school was illegally violating student rights.

During this talk, I found myself glad that OCR exists. It was helpful to know that students can ensure that their civil rights are being respected without having to elevate cases to the level of a legal action suit if/when things go wrong. Additionally, I was encouraged that educators at this conference were learning about the legal rights that belong to their students to hopefully avoid violating them.

Perhaps most liberating for me was the sheer idea that many of the instances I have heard in which students were denied accommodations were, in fact, illegal. Oftentimes, students with illnesses and/or disabilities are made to feel as though they are asking for a favor when requesting accommodations – that they are disrupting the norm and asking for an “exception” to a rule that applies to everyone else.

In reality, students can and should, as a matter of law, be able to receive the accommodations that allow them to reach their full potential and be a valued member of their medical team who is not looked down upon for something that brings unique strengths.

 

 

Topic 2. Removing the barriers to health science education – “Beyond legal compliance to valued inclusion”

This was one of the very first talks of the conference, and I think it is the one that summed up the general spirit very well. It started with a basic question: What could health science education look like if we started from a place of valuing disability?

The problems with our current attitudes and systems

In order to understand where health science education can go in regards to disability, we must understand the current system. An important component of this involves speaking with trainees. The speaker of this talk described some pretty sobering survey results: students reported that they felt as though disability was devalued, stigmatized, and seen as a liability that was incongruent with being a good physician. Students often felt alone in their experiences and were trying to navigate the system on their own. It was often difficult for students to know where to go for help.

Oftentimes, this lack of transparency and the plethora of documentation required to “prove” that a student has a disability silently convey a few powerful messages. As a result, students began to feel that “disabled” was a negative label that could follow them throughout their lives. They were taught to expect that they will be questioned about whether they are “truly” disabled. If students did choose to go through the lengthy process of pursuing accommodations or support, they often had to “prove” that they were still capable of handling the intense workload of medical school.

Medical school is extremely difficult, and the culture of medicine conveys the message that being able to make it to the other side requires showing no weakness. Disability, in particular, is stigmatized as a “weakness” that is then incompatible with being a physician. As a result, students are led to believe that they must suppress or hide their disability, or they must “overcome” its challenges in order to succeed. This is a phenomenon known as the hidden curriculum, and multiple articles highlight this culture as a massive problem when it comes to student health and wellness.

Recent data convey that administrators also realize that the current medical curriculum simply is not designed to foster the success of students with disabilities. When surveyed, many administrators expressed that access was often an afterthought to the design of the curriculum. This can perhaps most clearly be seen in the writing of “technical standards,” or a set of criteria that students must meet in order to be accepted in the medical school. These standards often involve rigid ideas of physical capabilities and pacing of the curriculum, implying that there is no flexibility in the structure that was designed without the true diversity of students in mind.

This rigid method of design means that in order to be included, students with disabilities must fight to be granted an exception to the rule. Consequently, students with disabilities sometimes become merely an inconvenience to a system in which they were never designed to fit simply because their existence was not considered or valued.

Overall, our current approach to inclusion has limited benefits and means working with individual students to navigate through multiple layers of administrative red tape. This leads to the perception that disability equals inability and that disability is a “problem” to be “managed” rather than an expected and accepted way of being in this world.

 

So how do we begin to make disability a valued and expected trait within a medical school?

  1. Change the narrative
    1. Even as a student who identifies as having a disability stemming from my chronic illness, I have never encountered any formal curriculum regarding disability. I have never been told about successful peers or physicians who have disabilities. I have never learned from my institution about the strengths that can arise from having students with a disability at one’s medical institution.
    2. This is, unfortunately, a common experience in many medical schools across the U.S. Diversity outreaches and efforts must not further marginalize those who have a disability by neglecting to include them.
    3. Medical schools: please show us that disability does not always include physical signs like a wheelchair or a prosthetic. Help us understand the existence of invisible illnesses and sensory or learning impairments that cannot be seen. Emphasize to us that these impairments do not make a person lesser.
    4. Tell us stories about how disabilities make people strong. Tell us about the many amazing physicians who use their own unique experiences with disability to become better advocates for and supporters of their patients. Help us embrace our identities and be proud. Show us all what we can become.
  2. Teach disability
    1. Beyond simply providing models and stories of the disability community – it is important that medical schools strive to teach us the basics of disability. This is perhaps one of the things that, once I heard about it, seemed so simple yet stunning that it is not a common practice in medical institutions.
    2. As physicians, a huge proportion of the population we will treat in the future may identify as disabled or have effects from their chronic illness that they must confront every day. Unfortunately, if you asked the majority of medical students what “disability” means, I think very few would be able to define it (including myself, before the past year or two!).
    3. Our curriculum teaches the medical model of disability (see more on the medical vs social model of disability from my last conference wrap-up here) inherently by presenting diseases and ways to “fix” or “cure” the “problems” associated with disability. Yet most medical schools do not teach the social model of disability, or the understanding that the “problem” is not with the person who has an illness/condition, but with a society that has been built with a normative person in mind. Most programs never formally discuss the obstacles that our patients face perhaps not because of their illness, but because of an apartment complex that only has stairs or a classroom where the speaker never uses the microphone.
    4. What does disability mean? Does everyone with an illness define themselves as disabled? What barriers have we created to access? How do those barriers affect our patients’ lives?
  3. Foster community around disability
    1. Many institutions are beginning to have collective spaces that allow students to receive tailored learning strategies and/or discuss mental health. Some of these schools even have “wellness support groups” for medical students.
    2. But there is a problem: the students with disabilities are having a completely different experience than those without a disability. The experiences that they hope to share often aren’t related to the challenges faced by other medical students. As a result, students with a disability are often silently encouraged to hide their disability, as it does not fit in.
    3. To this point, the speaker argued that there needs to be a formalized space for students to connect with others who have a disability within medicine to discuss experiences, share resources, and more.
  4. Make disability resources much more transparent
    1. Many universities do not actually have disability services within the medical school specifically. UAB is an example of an institution that works this way – we have our medical student services to provide general academic help to trainees, but completely separate from that, we have a disability support services (DSS). Our DSS is campus-wide, meaning that they serve the needs of all students, from undergraduate to graduate to everything in between. Sometimes, this comes at the expense of medical students.
    2. Unfortunately, this separation can cause confusion. One side of the conversation (the disability office or equivalent) is uncertain of what type of help a student would need in medical school, as this differs significantly from the undergraduate experience. The other side (medical school) is not as aware of disability policy and what types of accommodations or rights even exist for students. Communication gaps are almost bound to ensue.
    3. As a student, I can certainly testify that it can be confusing to know where to even begin in terms of seeking help for a disability. Do I go through a generic process of receiving support from an entity that is not linked to my medical school specifically? How does DSS (or other related services) determine what accommodations you can obtain? Who do I go to within my medical school? What is each person’s role in the process? Is there someone who follows up with me to make sure my accommodations have been effective and respected?
    4. As the speaker very powerfully pointed out, it is a form of micro-aggression to make it extremely difficult for students with disabilities to understand what accommodations are available or to know their own rights.
  5. Proactively educate faculty and all students about accommodations, rights, and policies
    1. Again, medical schools should expect that they will have students with disabilities as part of their incoming class. As a result, they must train and educate their faculty and prepare them to teach a diverse class of future physicians.
    2. Can faculty receive information on the basics of disability studies? Can a workshop help them understand what rights students have and how their classes may or may not be well-suited for diverse learners? Can they be given guidance on how to improve any weaknesses in the accessibility of their material?
    3. Can all students be educated about what options exist for them to make the curriculum more accessible as early as the first orientation day at a medical school, or perhaps on the website of the school even before applying?

If we want real equity and inclusion for people with disabilities, it is not enough to just accommodate. This is where the concept of universal design comes into play – that is, planning the curriculum in a way that has anticipated that there will be students with and without disabilities. We need to ensure that the things we put into place in our curricula now are equally accessible to all, not retroactively responding to the times when students struggle.

In other words, if we want real equity and inclusion for students with disabilities, we must transform the system. We need to ask ourselves: what is truly essential about being a doctor? What is needed from our young professionals to provide the best healthcare for all patients in the future? How do we close current gaps and healthcare disparities?

This is where students with disabilities can in fact bring a great deal of knowledge, as they have often fallen through cracks that their healthy peers may not even realize exist. We thus need the voices of students and administrators who have disabilities within these discussions, helping to re-conceive medical programs in ways that deliberately include the most vulnerable.

 

 

Concluding Thoughts

As a whole, my trip for the conference was a whirlwind, lasting from a Wednesday to a Friday. In addition to being jam-packed with opportunities for education and advocacy, I also had the chance to experience a major part of the US for the first time. Upon arriving into DC, I was already pretty enamored. On the drive from the airport to the hotel, we saw the Washington Monument, the Capitol building, the Holocaust museum, the cherry blossoms that bloom beautifully there in the spring, and more.

The hotel in which the MSTP graciously booked for me was directly in the city center, a quick two-block walk or so from the White House and just about any attraction I could have imagined. Fortunately, I did have a little extra time in between all of the bustling meetings of the conference to do some exploring of those areas. I’ve included a few pictures from my journey in a collage at the bottom of this post… but I’ll definitely be heading back to DC sometime to see more!

Overall, my trip to DC provided me with an incredible education regarding disability law and policy, new connections with medical educators from all over the country, and the chance to see a few of the country’s most historic sites. To have a program that is willing to support me in all kinds of professional and personal growth is awesome beyond belief. The whole trip was an incredible gift… thanks again, UAB MSTP!

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-Emily Hayward, GS-1

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