I Will Not Try To Fix You

Disability—The Oxford dictionary defines disability as “a physical or mental condition that limits a person’s movements, senses, or activities.”

Although some disabled people have medical ailments, the two conditions are not synonymous. While a disabled person might require medical attention, disability is defined by social barriers, not pathophysiology.

It is an umbrella term and includes impairments and activity limitations. Impairment is a problem in the body’s structure or function; activity limitation is a difficulty encountered by an individual in executing a task or action.

Disability is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

Those with disabilities have capacities for motor, sensory, and cognitive tasks that differ from the “norm.” Each individual has different qualities and capabilities, but defining this “norm” is practically impossible. Society can create barriers that do not allow an individual to develop to his or her full potential. Likewise, society can remove disabling barriers. A wheelchair user cannot get into a building with steps at the entrance, but a ramp or a lift completely removes that particular barrier. Seated before a ramp, is an individual in a wheelchair disabled?

An individual with Down Syndrome can hold meaningful employment if provided with appropriate support. Down Syndrome itself is not a disability; it is a medical condition. An individual will experience specific barriers that emerge because of the relationship between impairments and societal barriers. The presence or absence of medical conditions can cause one individual to vary from another in terms of motor, sensory, and cognitive function, but an individual is only disabled when appropriate accommodations are not made.

As a societal construct, disability fluctuates in different settings. In a completely adapted home, or with adequate assistance, an individual might have no disability at all; while, in an environment without assistance, this person might become disabled.

Physicians treat medical conditions and, as such, they tend to focus on the “limitations” and “abnormalities” associated with disabled people’s conditions; heart disease, for example, in those with Down syndrome. Disabilities, however, are not medical conditions in and of themselves. The role of a physician is to assess the health of a disabled person, provide treatment for associated symptoms, and anticipate as well as prevent future complications. This can greatly improve a disabled person’s quality of life, and, in some cases, even prolong life. Fixing the disability is not in the doctor’s job description.

How do you, as a medical student, perceive disabled people? Do you feel as if medicine failed them by not being able to “cure” them?

Disability is not tragic; it is tragic that society doesn’t appreciate the abilities of disabled individuals.

Disabled people often report being patronized by medical staff, being described as having “a fate worse than death”, or carrying an “unhealthy gene”, as well as “suffering” from a condition. Consider the power of language. Great advances have been made in both medicine and technology, and even more in the public’s perception and understanding of disability.

Disabled people have more freedom, independence, and equality than they did previously, but there is further work to be done. Rather than making a distinction between disabled or not, physicians should be leaders in embracing diversity and independent living for all of their patients, including disabled people.

Dr. Chris Smith – a disabled associate professor of communication arts and sciences at Calvin College, USA – recently spoke about perceptions towards disabled people, stating that “the ultimate test of living in community is found in our willingness to change our minds about one another.”

People with disabilities have the same health needs as non-disabled people – for immunizations, cancer screening etc. They may experience a narrower margin of health, due to both poverty and social exclusion, and also because they may be vulnerable to secondary conditions. Evidence suggests that disabled people face barriers in accessing the health and rehabilitation services they need in many settings.

As future physicians, it is important to view disabled patients equally to all others, whilst acknowledging the barriers they face. When approaching your disabled patients, do not define them by their impairment, do not pity them, do not try to “fix” them; rather, appreciate their abilities, recognize them for their values and behaviors, support them to achieve their aspirations, and, most importantly, listen to them.

Featured image:
disability by Abhijit Bhaduri

Marija Kusulja

Marija Kusulja is a graduate of the University of Zagreb, School of Medicine in Croatia and a medical intern at the Zagreb Institute of Emergency Medicine.

Leave a Reply

Your email address will not be published. Required fields are marked *