Women with disabilities: Health care barriers by Rosemary Musachio

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Rosemary Musachio, Chief Strategic Officer

Several years ago I asked my mom’s gynecologist if she could give me a routine pelvic examination.  She said she would have to put me under anesthesia to perform the exam because my cerebral palsy would not allow my body to hold still.  Although her reply was cordial, it made me feel demeaned, as if I was a second-class citizen.   Couldn’t she have her medical assistant hold my legs while she examined me?  In fact, that would have been a reasonable accommodation under the Americans with Disabilities Act (ADA).

This is the kind of treatment that women with disabilities usually face regarding their health care.  According to the Center for Research on Women with Disabilities (CROWD), we have more difficulty obtaining health care than non-disabled women.  The National Study of Women with Physical Disabilities supports this, stating that we are less likely to have pelvic exams than women without disabilities.

Besides attitudinal barriers, we also face physical obstacles in doctors’ offices and hospitals.  For example, when I get a mammogram, I have to become a contortionist.  I have to put one arm upright leaning against the mammography unit, hang on to the bar with the other hand, and rest my uplifted chin against the front of the machine.  Include the fact that my body has difficulty keeping still and this almost pain-free routine exam becomes a very uncomfortable feat.  Not only am I nervous about the mammogram results, I’m also afraid that I’ll bump my face against the machine.  My incidents are not unique.  Cases exist where women with disabilities were duct taped to mammography machines.  Besides the discomfort, an inaccessible mammography machine may cause unreadable x-ray images, for the patient may move and cause one or both breasts not to be x-rayed correctly.  Consequently, potential tumors may be overlooked.

Struggles that women with disabilities face regarding healthcare stems from several reasons.  (These reasons also can pertain to men with disabilities.)  First, many medical professionals are ignorant of who we really are.  Some think we must be asexual.  Because we cannot walk or we have muscle spasms, they assume we also cannot use our bodies to love others or procreate.  So they think our intimate organs do not need preventative or medical care. Some doctors suggest hysterectomies to eliminate the hassle of menstrual cycles, assuming we don’t have the desire to become mothers. If we get breast cancer, we may not be offered reconstructive surgery because many doctors don’t see us as having female bodies but as having disabled ones.

Lack of training also contributes to health care issues for us.  Take the GYN incident above.  If the doctor knew how to give an exam to a woman with cerebral palsy, she wouldn’t have suggested the anesthesia or refused medical care.  Medical professionals should know how to gently stretch a woman’s legs if they are spastic or place a woman with spinal conditions in comfortable positions during an exam.  These techniques should be taught in medical school.  The patient also could inform the medical professional about ways to make her feel comfortable and relaxed as possible while she is being examined.

Financial issues and logistics are other obstacles that women with disabilities have to overcome to receive proper healthcare.  Many women with disabilities are on Medicaid and Medicare, which deters physicians from accepting their cases.  CROWD reports that even if women with disabilities have private insurance, many insurance companies may not pay for specific prescriptions, procedures, therapies, or assistive devices.  As an example, insurance may not pay for estrogen therapy because it is not considered a medical necessity.

Although Title II and Title III of the ADA require medical facilities to have accessible medical equipment, many still are not complying.  It is like a double-edged sword.  Hospitals and doctors may not invest in such equipment because patients with disabilities are few, while we don’t go to these facilities because they lack accommodations.  An accessible gynecological exam table, for instance, that can be lowered for easy wheelchair transfers costs between $4,000 and $10,000.  While this is expensive, it can be offset with tax incentives.

27 million women in this country and 16% of the world’s women have some kind of disability.  As populations become older and live longer, many other women will develop debilitating conditions.  Medical facilities and professionals need to realize women with disabilities are not in the minority.  More importantly, they must know that we are needed as daughters, sisters, friends, wives, mothers, and productive members of society.  So proper healthcare is vital to help us continue fulfilling these roles.

Yet, the responsibility of obtaining health care also lies with us.  We should tell doctors, medical assistants, and nurses how they could assist us in receiving the best care possible.  If they refuse to comply, then we should seek legal or other public action to ensure that all women with disabilities get the care that they deserve.

 

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