Healthcare is a topic that has been in discussion a lot lately in our political climate. Whether you are on one side or another of the debate, we all can agree that healthcare is something we all wish to have easy and affordable access to. Paying attention to our health is vital to our personal care. Thinking about my role within this entire system I have some thoughts.
Soon, I will be beginning my service as a volunteer medical assistant at a local free clinic. As a pre-med student, I am absolutely ecstatic to work for an organization that is committed to the ideal of healthcare as a basic human right. Last night, I was filling out my paperwork and completing some pre-orientation training. At the end of learning about the incredibly comprehensive care this small clinic offered to approximately 1,600 patients, I reached the last section of training: health care considerations for gender non-conforming patients. Often, this cohort faces a lot of difficulty accessing care because of their gender expression and how it relates to their bodies. Gender non-conforming patients are often discriminated against, misunderstood, disrespected, and are at-risk for higher incidence of certain medical issues that they are less likely to get treatment for because of the way they have been treated by healthcare providers in their lifetime.
I was extremely pleased by this training because it is absolutely necessary in ultimately reaching the goal for empathetic, quality healthcare for all. However, it got me thinking, what about all non-conforming bodies? Specifically, what about the community of people with disabilities (PwD)? What challenges do they face accessing healthcare and as a future provider, what can I do to educate myself and address these problems?
As I began my investigation, I encountered a prevailing attitudinal problem in accessing quality care for the PwD community that held parallels with the gender non-conforming community: the perception that your non-conforming body is the primary and predominant factor in diagnoses and treatments and that you are too difficult of a patient to treat. In no way is this the only barrier to access. One would have to live in a complete vacuum to not be aware of the debate on healthcare and the affordability of healthcare in this country, let alone the myriad of other barriers to access. However, I’d like to focus on this barrier because of it’s compelling social and cultural implications in how we perceive non-conforming bodies.
In the transgender community, activists have named the tendency for providers to attribute all their medical complaints to the fact that they are trans “trans broken arm syndrome”. It comes from a hypothetical scenario: a trans person goes to the emergency room for a broken arm and upon realizing their patient is trans, the provider ignores their arm altogether, concentrating all their attention on the fact that they are transgender[1].
In a qualitative study conducted by Dr. Mary Ann McColl (et. al.) on Physician Experiences Providing Primary Care to People with Disabilities, her team of investigators found that one-fifth of the primary care physicians participating in their study held a similar perception to their patients with disabilities[2]. This can cloud the judgment of the physician’s diagnostic reasoning by not properly exploring alternative causes to their patient’s complaints. It can also be incredibly insensitive to someone’s whole being. What a patient with a disability may perceive as simple a state of being, as they have simply lived with their disability and learned to adapt successfully to it, the provider perceives it as inherently illness. Disease does in fact coexist with disability but it is not an implicit condition of being disabled.
An incredible and compelling anecdote of these contradictory attitudes can be found in the neurologist Dr. Oliver Sacks’s case study of a man who has restored sight after being blind from the age of 10-50 titled To See and Not See. Virgil was suddenly able to see for the first time in his life after strong encouragement from his fiancee to pursue corrective surgery that suddenly became an option following the discovery of a misdiagnosis from when he first lost his sight. Virgil’s world descended into neurological chaos after the surgery in a strikingly similar fashion to the only 20 other cases ever recorded[3]. Vision was overwhelming and confusing because Virgil was astutely adapted to navigating the world without sight. Dr. Sacks explains that seeing and sight are two separate things. One must learn to see with the eyes and Virgil was no exception. He often found himself closing his eyes and reverting back to tactile sensing instead of dealing with the menagerie of confusion that was the totally foreign and new perception of light and shadow[4]. In fact, Virgil expressed what could be interpreted as regret, explaining how he experienced much more fear with sight than without it[5].
This anecdote to me truly illustrates the mental block that disability can present to providers. I am not speaking on behalf of the whole community as I’m sure depending on an individual’s perception and circumstance that they may very well understand their disability in the context of illness. However, my point is that this is not always the case and healthcare providers should know that many people with disabilities perceive their condition as simply part of them- a state of being, not an illness. I for one have reached that point with my epilepsy because it is a mild and rare form that has resisted all treatment. I know what my baseline is and if I experienced a change in it, I would seek medical attention. It would be disheartening if I found that my provider did not listen to me or trust that I understood what was normal for me and didn’t take that into consideration in determining a treatment plan. In fact, beyond being disheartening, it could lead to poorly informed conclusions and ill-conceived treatment.
Dr. Mary Ann McColl’s study also found the providers participating in the study felt unprepared to give a proper examination of their patients with disabilities and experienced their patients teaching them about their bodies[6]. Many participating physicians expressed enthusiasm for this learning experience and how they felt it was very important to them.[7] However, in the same vein of thought, some of the participating physicians in Dr. McColl’s study were hesitant to take on patients with disabilities because they saw them as too difficult[8]. The need for patients to teach their physicians is common in trans patients as well. According to the National Center for Transgender Equality, over half of all trans people have to teach the fundamentals of trans health care to their providers[9]. This points to a serious deficiency in education and training, which can be mind-boggling for the patients- physicians are supposed to be the experts on their human body, not the other way around.
I think some educators and providers might see this training and awareness as taxing and perhaps, extraneous but I implore those in charge of training, receiving training and in practice to please consider the implications of more inclusive care for both patients and providers. This is bigger than us and our egos. Healthcare providers are entrusted with the most vulnerable parts of a person’s being and in order to uphold the integrity of the profession we must zealously guard and strengthen this trust. Being informed and trained to properly examine and treat a body-diverse patient population reinforces the trust they have in us.
Is it not natural to doubt the years of training and expertise that comes with medical training if a person must explain their body to you? By increasing awareness, improving medical training, taking personal responsibility for extra training, and truly listening to the patient with empathy and respect, we are not only ensuring patients have the best care that providers can give, we are also helping to maintain (or establish for the first time) their trust in the biomedical model as a whole. To do otherwise is a disservice to everything we have sacrificed for this role and as my journey continues, I am well aware that the sacrifices are great. We have nothing to lose in becoming more informed but a lot to gain and take back in terms of respect and trust. I hope that learning to more effectively treat anyone who has a non-conforming body will become a vital aspect to our training. Then one day, no one will hesitate to seek medical attention out of apprehension, but instead trust and respect their team of healthcare providers and feel supported, affirmed, and cared for.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[3] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[4] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[5] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[6]https://www.theguardian.com/society/2016/may/03/transgender-healthcare-doctor-oneonta-new-york-carolyn-wolf-gould
[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[8] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[9]https://www.theguardian.com/society/2016/may/03/transgender-healthcare-doctor-oneonta-new-york-carolyn-wolf-gould
Written by Rosemary Musachio, Chief Accessibility Officer (CAO) at Ruh Global Communications
A few months ago, the local news program did a piece on a man with a disability getting married to a woman without a disability. Why is that news, I thought. Thousands of couples marry each day, yet their nuptials aren’t featured on the six o’clock news.
Like everyone else, persons with disabilities are romantic and sexual. We need to love and be loved. Although some of us can’t move our legs or our arms, our hearts still beat like African drums when we’re in love. Although some of us can’t use our hands to caress or our lips to kiss, we find other ways to express our love and desires. If society doesn’t know this, it shouldn’t matter, right?
Wrong.
Dr. Danielle Sheypuk is a sex therapist for persons with disabilities. In a TedTalk she gave, she said sex is one of the basic drives of humanity. According to Dr. Sheypuk, a former Miss Wheelchair New York, persons with disabilities are ignored in the dating scene because society sees us as asexual beings. Once again, it all stems back on how the media portrays us, or rather how it shows the ideal man and woman. They have biotic abilities and mint beauty. They can do incredible gymnastics in the bedroom without breaking bones or even getting their hair messed up! So when people see these images, they search for similar characteristics in romantic partners. To them, therefore, we may be considered broken or sick.
As I wrote in The Media Shines A Brighter Spotlight on Persons with Disabilities, the film industry has portrayed us as asexual until recently. Films like “My Left Foot” and “Christie” show how we aren’t considered sexual beings by the able-bodied. Movies such as “Children of a Lesser God”, “The Intouchables”, and “Me Before You”, however, show how persons with disabilities can be desirable to individuals without them. In these films, the non-disabled partner is either a caregiver or a teacher whose profession allows them to see beyond the disability. Because of their professions, they become acquainted with the individuals, not their debilitating conditions.
Besides asexual, society has portrayed us as other sexual stereotypes. As Dr. Tom Shakespeare wrote in his book The Sexual Politics of Disability, we also are misconceived as hypersexual. Since nobody wants us, we have plenty to give. This myth has led to horrible consequences. When persons with disabilities were institutionalized, facility workers often used to molest and rape them. Sadly, cases still exist today. For example, according to Care2, California reported thirty-eight incidents of molestation and rape at developmental disabilities facilities within the last four years.
Another stereotypical belief cited by Dr. Shakespeare is that our disabilities will be inherited by our children. Many disabilities are not genetic, however. So if a person who has cerebral palsy or paralysis due to an accident, the baby probably wouldn’t have a disability as the parent has. Yet, even if a person has a genetic impairment, having sex isn’t about procreation. It’s about expressing love, feeling pleasure, and making someone else feel it.
Those stereotypes that Dr. Shakespeare identified are discussed in depth in the 1994 documentary Untold Desires. The extreme blunt 1994 film presents the perspectives of men and women with disabilities, caregivers, and health professional about sexuality. Although it was created twenty-three years ago, it still compels viewers to open their minds about how we can show love and passion in diverse ways. The documentary was filmed in Australia when ideals and beliefs have been more progressive than those of the United States during that time and even now.
Individuals with disabilities definitely can show love and give pleasure. They just may not do it as everyone else seems to do it. As Andrew Morrison Gurza writes in Why Sex With Someone With a Disability Is the Best Sex You Could Be Having!, arousal and fulfillment can be achieved in several other ways than normal intercourse. When you make love to a person who can’t be in certain positions, it forces you to be creative. The creativity makes sex more exciting, more spiritual in some cases. Since this is a PG-rated blog, you need to use your imagination as you do in lovemaking. Yet, here are subtle hints: different positions, assistive sexual devices, and different parts of the body.
As Gurza also states in his article, besides using creativity, another benefit to making love with a person with a disability is open communications. The intimacy doesn’t start with the body; it starts with the mind, heart, and soul. Even before the lovemaking begins, you need to know what works, what hurts, and what makes both of you orbit. Afterwards, you should talk about the same things, only in the past tense. Many persons without disabilities don’t need to communicate before or after having sex. While they may experience momentarily pleasure, they may not feel fulfillment in their souls as (ironically) those who have physical obstacles do.
Some individuals with disabilities are compelled to seek sex surrogates if they can’t find anyone who is accepting, understanding, and compassionate enough to have a relationship with them. In “The Sessions”, Helen Hunt portrays a sex therapist who helps a paralyzed man with an iron lung have his first sexual experience. Both of them develop feelings for each other, overstepping the therapist-client relationship. While the concept of having a sexual surrogate is well intended, we shouldn’t have to go to that extreme. We should be able to find a loving, caring partner somehow, someway. Yet, this is romantic fiction for many of us.
So I guess running a story on the six o’clock news about someone with a disability getting married is noteworthy. It proves that being attracted or in love with us isn’t fiction at all.
The media always has had a tremendous impact on molding public view about persons with disabilities (PWD). Until twenty years ago, the media portrayed us as helpless, heroic, or mean. It did not show us as people who held jobs, were in romantic relationships, or raised families. These portrayals are based on Dark Ages perceptions of us. PWDs were institutionalized or hidden away in the back room. If a PWD managed to overcome obstacles, such as FDR, they did not publicize that they were disabled.
For example, such films as “The Elephant Man”, “Born on the Fourth of July”, “The Glass Menagerie”, and “The Waterdance” all depict characters with disabilities who are down on themselves, who are programmed to think they are worthless in society’s eyes. Their negative self-images cast shadows over the viewing audience’s perspective towards us. Scenes of the poor helpless disabled resonate in a viewer’s mind if it is not open. These types of movies run the risk of making employers ask themselves “Why would I want to hire someone like that?”. They dissuade other persons to interact with us.
At the other extreme, movies like “Rain Man”, “My Left Foot”, and “Rear Window” show persons with disabilities as heroic, as having some kind of God-given power to solve problems that nobody else or to be renown for some great feat. While this may boost our egos, the hero concept can place pressure on us. I’ve experienced this throughout my life. I’ve been expected to be the Wonder Woman of the Intellect because I’m intelligent with disabilities, not just because I’m an intelligent person. Being looked upon as a hero also gives the false assumption that we don’t need assistance or accommodations.
Persons with disabilities also have been portrayed as ill-spirited. Mr. Potter in “It’s A Wonderful Life”, for instance, is a banker in a wheelchair who is greedy and mean. Another example is Peter Sellers’ “Dr. Strangelove, an evil scientist who also is in a wheelchair. The stereotypical role gives the perception of being disabled makes someone mean or unfriendly. Again, this perception may seep into people’s subconscious, especially those of children. They may see mean fictional characters with disabilities, such as Captain Hook in “Peter Pan”, Quasimodo in the “Hunchback of Notre Dame”, and Darth Vadar in “Star Wars”; and then they may be frightened to approach real persons with disabilities.
Yet, the media finally emerged from the dark ages. Movies and television shows have started
portraying us in a much more positive light in the last twenty years. For example, an actual actress who is deaf (Marlee Martlin) played an assistant district attorney who is deaf in “Reasonable Doubts”. Other examples include a policeman who is in a wheelchair in “Cagney and Lacey”, a doctor who walks with a cane in “House”, and a paralyzed professor in “Professor X”, just to name a few. The movie “Intouchables” even portrays a rich quadriplegic who ends up paragliding and getting a girlfriend.
Nowadays actors with disabilities also are earning awards for television and movie roles. At the recent Emmy Awards, Peter Linkage won the Best Supporting Actor Award for Games of Thrones. Dinklage has dwarfism, yet his disability actually helped land his role. Marlee Marlin, mentioned above, earned an Oscar and Golden Globe for Best Actress for “Children of A Lesser God”, where she portrays a deaf cleaning woman whose intelligence is discovered by a special education teacher.
Although no scientific studies have been conducted between public perspective of persons with disabilities and their portrayals in the movies, seeing positive images of us in the media can only foster further integration in society. Businesses are more motivated to employ us if they view us as doctors and lawyers on the movie and T.V. More beauty and sex appeal are attributed to us if more we are shown as caring, loving, and sexual on the small and big screen. If the entertainment industry wouldn’t focus on the disability but on the characters who just happens to be disabled, then society would follow suit.
