Nicole is a young woman with complete androgen insensitivity syndrome
who is about to head off to college. She is also thinking about starting the
process of dilation to enlarge the shallow vaginal opening she was born with as
a result of her condition. She may need to spend several hours a week attending
to this intimate procedure, and she is apprehensive about how she will
accomplish this in a dorm setting with roommates.
When I learned of this problem in the course of consulting with her
family about an unrelated legal matter, I suggested that she could ask her
doctor to write a letter to her university requesting that she be given a
private room as a reasonable accommodation under the Americans with
Disabilities Act. Nicole and her parents were surprised to hear of this option
— they had never considered androgen insensitivity syndrome (AIS) to be a
For many, the term “disability” calls up very specific images.
The most obvious effect of the Americans with Disabilities Act is in the
proliferation of accommodations such as wheelchair-accessible spaces and
Braille signs, but the Americans with Disabilities Act is meant to ensure
opportunities for full participation in society for all people with
disabilities, not just those with visible or major disabilities.
The definition of disability in the Americans with Disabilities Act
includes impairments that limit endocrine, reproductive and genitourinary
functions. The degree of impairment can be fairly minor. For example, the need
for daily medication may indicate an impairment, even if the person functions
quite well when taking the medication. Under this definition, it seems that AIS
would qualify for protection, along with most other differences of sex
development (DSD) and many other medical conditions encountered by
It is helpful for medical providers to have a sense of when a
patient’s medical issues may trigger Americans with Disabilities Act
protection because, similar to Nicole’s family, many are not aware of the
broad reach of this law. If a person’s medical condition meets the
definition of a disability under the Americans with Disabilities Act, then she
is protected from discrimination on the basis of that disability by employers,
schools, public accommodations, government agencies and commercial facilities.
These entities must also make reasonable accommodations or modifications to
policies to enable participation by those with disabilities.
To make this a bit more concrete, I will provide some examples of how
the Americans with Disabilities Act can work to make life easier for those with
DSD. I am focusing on DSD because it is my area of specialty, but the rules
apply to a range of other conditions that endocrinologists encounter.
Kayla is a 4-year-old with congenital adrenal hyperplasia (CAH). Her
parents wanted to enroll her in a private nursery school. However, when the
school learned about the possibility that Kayla would experience adrenal
crisis, they told her parents they were not prepared to accept the
responsibility and refused to take her as a student. They were unwilling to
talk with her parents or doctor about potential strategies for management.
When Kayla’s parents spoke to a lawyer, they learned that her CAH
probably qualified as a disability under the Americans with Disabilities Act
because it substantially limits her endocrine function. Although the school
would not be required to enroll a student with a serious medical condition that
they were truly unable to handle, they were obligated to individually assess
Kayla’s situation to see if there is some reasonable accommodation that
would make it possible for her to safely participate. For children with
mild-to-moderate CAH, it ought to be possible for most schools to arrange a
strategy that would allow participation.
Steve was born with partial AIS. He and his wife wanted to adopt a child
through open adoption. When the adoption agency requested a medical history
from his doctor, it learned that Steve had been assigned female at birth and
reassigned as male early in his childhood. The agency then told Steve that it
did not think birth parents would be comfortable choosing someone such as him
as an adoptive parent and refused to serve him. Under the Americans with
Disabilities Act, it is likely that this would be considered impermissible
discrimination. Steve’s doctor recommended that he consult an attorney.
These examples give a sense of the range of situations in which the
Americans with Disabilities Act may provide some protection for those with DSD
or other medical conditions. When doctors recognize that their patients have
faced discrimination or that there are obstacles to their full participation in
society that could be removed, it can be helpful to point out the broad
coverage of the act. Although a letter from a doctor is not required in all
cases, such a letter can often do a lot to smooth the way.
It is important to be strategic about how medical information is
communicated in these cases to protect the patient’s privacy and minimize
stress on the patient and family. In Steve’s case, for example, his doctor
had offered too much information on the medical history by going into detail
about his history of gender misassignment. The adoption agency was looking for
information about his ability to care for a child, and that particular detail
was not relevant. If the medical history had been limited to the minimum
information necessary, the discrimination may never have occurred.
For Kayla, the school may need very specific information about how her
endocrine disorder is managed on a daily basis, but it probably does not need
to know about any history of genital atypicality. In Nicole’s case, school
officials may wonder why a young woman with no visible disability would need a
private room, which could lead to intrusive and unnecessary questions. A letter
from a physician, simply stating that she has a medical condition and requires
privacy for her daily care may forestall questions and get the university
focused on providing the needed accommodation. In most cases, it is a good idea
to focus on verifying the medical need for accommodation, rather than offering
unnecessary details about the particular medical condition.
In some situations, self-advocacy, even with support from a doctor, will
not be enough. If patients continue to encounter unreasonable barriers to
school, employment or use of public facilities, it may be necessary to refer
them to an attorney or to a local disability advocacy group.
Anne Tamar-Mattis, JD, is an executive director of Advocates for
Informed Choice, Cotati, Calif. She welcomes responses to this article at
Disclosure: Dr. Tamar-Mattis reports no relevant financial