As a follow-up to the September issue’s story on the curriculum changes at the University of Minnesota Medical School, we are providing for you a synopsis of the Report on Disabilities Culture from the subgroup that helped create and implement those changes.

Members of the subgroup that met in 1999 to help formalize the co-curriculum series are: Chairpersons,  Linda Wolford, then of Courage Center, presently of Ramsey County Human Services, and Elaine Shelley, activist and performance poet. Other Members include: Scott Crowe, medical student; Barb Blacklock, Disability Services at U. of M.; Sue Lindgren, Disabled Student Cultural Center; Gene Chelberg, Disability Services; Mai Thor, St. Mary’s campus of St. Catherines; Wendy Brower, Disability Institute; Michael Cohn, Executive director of Promote Awareness; Craig Christianson, Family Practice; Barbara Hanna, community activist; Carolyn Allshouse, Pacer Center; Joy Mincey Powell, activist and performer; and Nancy Meyers.

The group answered four questions for the staff at the University. Rather than explain each question individually, we have excerpted information from each question and grouped them into categories of significance that people with disabilities have when interacting with health care professionals. I have chosen only to focus on the realities of people with disabilities and how these issues affect them, and pretend that, in my world, the myths and misconceptions that exist can be eradicated.

Quality of Life

• People with disabilities want to be seen as whole, productive people.
• People with disabilities are more concerned with their quality of life than how to be cured. Many people with disabilities are healthy and have lower absenteeism rates than other employees.
• People with disabilities have many talents and skills and can be very productive. Of the 70% of people with disabilities that are unemployed two-thirds are actively seeking employment.
• It is appropriate to use the word “normal” when describing symptoms or processes.  However, when addressing a person, focus on the whole person, not just their symptoms that may be abnormal. Individuals respond to their disability in many ways and their disability should not be viewed as a tragedy, but as a mere fact of life.

• People with disabilities have modesty issues just like all patients and their modesty may be heightened due to body image issues. Therefore, they are just as uncomfortable being examined by numerous physicians.
• People with disabilities see themselves as sexual and need access to sex education, birth control just like all other patients. Women and girls with disabilities are susceptible to sexual and physical abuse, and physicians should look for signs of abuse when treating them.
• People with disabilities and their families may assume they can’t have children. This could lead to unprotected sex and unwanted pregnancies. Physicians should help the family of individuals with disabilities talk about sexuality health issues. When there is a diagnosis of a potential disability in an unborn fetus, there needs to be a balanced perspective in making referrals to the person and their families in deciding the outcome of the pregnancy. Resources and options that show people with disabilities leading quality lives need to be shared to the potential parents.

• Medical advances like cochlear implants may not be embraced by everyone. Members of the Deaf community see their deafness as an important aspect of their identity and often do not identify themselves as disabled, therefore may not be receiving all the benefits they are entitled.
• When communicating with a deaf person, it is best to have a  qualified sign language interpreter. If one is not available, write the information down in easy to read language. Do not rely on lip reading by the individual who is deaf, this could lead to miscommunication and a misdiagnosis.

• People with disabilities come in all sizes and variations, as do their conditions, even if two people have the same disability. The physician should ask questions to each person with a disability to identify individuality ensure the prescribed treatment regimen will work for them.
• The physician should be cognizant of the services that can enhance a patient’s care such as durable medical equipment, prescriptions, and therapies, as well as working with health insurance companies that limit “pre-existing conditions.” 
• When examining a patient with disabilities, the medical staff should be aware of how the person will transfer in the exam room and should ask if and/or how they should assist someone.