Disability vs. This Ability

There can be no question that events and circumstances beyond our control can provide us with experiences and understanding that change our world view and juxtapose us with people with whom we might otherwise not have anything in common. For example, after a spinal cord injury, an astrophysicist and a long-distance truck driver might have a shared understanding of disability, recovery, and the courage to succeed despite a “new normal”. But in all other respects, they remain different people with different interests, capabilities, training, and passions. All too often, though, the society around an individual with a disability defines that person primarily by their disability. It is as if who and what they were for most of their lives cease to matter.

The assumptions we make about individuals with disabilities are often mistaken. This is especially the case of the assumption that their goals, aspirations, capabilities, reactions to their disabilities, and expectations for recovery are all alike.

As a neurologist, I have known many individuals with spinal cord injury. Two I knew as professional colleagues, and the trajectories of their careers after their injuries were different from one another in interesting ways. Both persisted. Both continued as physicians and academic leaders. One shifted the focus of his research and clinical activities and made his new occupation inspiring the lives and capabilities of people who had sustained spinal cord injury. He turned adversity into advantage and used what he had learned and experienced to help others. The other wanted nothing more than to return to “life as usual” and to not be defined by or reminded of her injury. She had no inclination to pursue a career related to or informed topically by her physical condition. Although it took enormous adaptations and ingenuity, she continued to pursue her prior career goal to become a psychiatrist and I suspect her patients have long felt that her disability is completely beside the point.

(I find it difficult to grasp why this concept is often hard to understand. I always tell puzzled people that I was a pediatrician long before I had children and, after I delivered three children, I had no desire or skills to become an obstetrician!)

I have been privileged to work in several institutions, including NINDS, that have programs that train individuals with cognitive and behavioral disabilities and place them in employment positions, both within and outside of the training institution. I see potential employers and colleagues begin with the assumption that this individual is yet another person with autism or cognitive challenge, like all the others. As such, the tendency has been to place them all in the mail room or food service, instead of discovering and leveraging the unique strengths, predilections, and aptitudes of each.

Programs like “Project Search” (2022) have begun to change all of this. Such programs place people with Williams’ syndrome in settings that leverage their outgoing personalities, and verbal and musical abilities, and people with obsessive-compulsive traits in settings that leverage their predilection for routine and perfection. They go a step further and use the skills of career and job placement specialists to allow placements that play to unique aptitudes, likes, and dislikes and that foster pride, independence, and a sense of accomplishment in both the employee and the employer.

In a somewhat analogous manner, the choice of career and approach to life’s challenges should be made in such a way as to create advantage out of adversity and asset out of potential liability. Some of the world’s greatest emergency medicine or intensive care physicians get bored focusing attention on a single issue all day or on a single patient throughout his or her life course; they would have been ill-suited for a career in family medicine. Conversely, the physician who loves the interpersonal and longitudinal relationship aspects of medicine but not its computational and basic science aspects might choose general pediatrics or family medicine or general psychiatry as a focus. The detail-oriented person might be the very best chief operating officer but the very worst company president, because the latter needs to exist far enough out of the weeds to chart an overarching vision.

An observational, narrative study done in Germany (Giese et al., 2021) evaluated individually by interview four students with visual impairment in regard to their perceptions and sense of being valued in their physical education classes at school. All four students were currently enrolled in schools specifically for visually impaired students. Three had previously been in inclusive schools in which a student with visual impairment was placed in a class with students without visual or other physical challenges. One of these three students had precipitously become visually impaired two years before the interview took place. The fourth student had always been in an educational environment specifically for students with visual impairment. They were all interviewed specifically about their experiences in their prior schools – heterogeneous with respect to physical challenges for three and perhaps more homogeneous with respect to visual challenges for one.

Both the similarities and differences among the students are interesting and informative. All four of the students felt viewed as different from other students and excluded by both students and teachers during physical education class. All felt they were of lower social status and lesser value than other students to both their fellow students and their teachers. Two blamed the teachers for this, while two blamed the government system that constructed and mandated the curriculum. In addition to being stereotyped as different, several students felt stereotyped as less intellectually capable and one described an instance in which other students felt a teacher who tried to make the game being played equitable for her had given her unfair advantage in competition against them. Several of the students were bullied and one felt treated by students and teachers alike as the object of other students’ entertainment and derision. Another was not bullied or derided ostensibly because he dealt with the other students’ exclusion of him and the teacher’s not wanting to bother adapting things for him by voluntarily withdrawing and isolating himself.

Perhaps most interesting is that the student who had always been in classes with other visually impaired students, some, including himself, with other coexisting challenges, felt there was a hierarchy of social worth among the students governed by severity of visual impairment and, most importantly, whether or not special accommodations or adaptations were needed for their participation in particular sports. Those who were most visually impaired or who had concomitant hearing or motor challenges that required accommodations were least valued and often excluded or derided by the other students. What seemed more homogeneous and was hypothesized to be more inclusive by the investigators and authors of the study was perceived and perhaps subconsciously engineered by the participating students and teachers to be just as socially hierarchical as the mixed class environment.

What comes to my mind in thinking about this study and my own experience as a child neurologist who frequently has had the privilege of having children and families dealing with disabilities share their lived experiences is the song and game from “Sesame Street” called “One of These Things is Not Like the Other”. Why is this game so compelling? Would a game called “What Do These Things Have in Common” be as popular? Would it serve to orient children from very early on to search for commonalities instead of excuses for exclusion and stereotyping as “other”? Now that is a societal experiment I would love to see done!

References

Giese M, Ruin S, Baumgärtner J, Haegele JA. (2021) “ . . . and after that came me”. Subjective constructions of social hierarchy in physical education classes among youth with visual impairments in Germany.” Int J Environ Res Public Health 18:10946. DOI: 10.3390/ijerph182010946 

Project Search. (2018) https://www.projectsearch.us/  Accessed January 17, 2022.