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.

Alzheimer’s disease is one of the scariest ailments facing mankind today.  The idea of not being in total control of your mind is a prospect most cannot fathom.  Many will be negatively and personally impacted in our lifetimes by this scary disease.  With the large generation of the baby boomers (76 million Americans) beginning to come of age, this threat becomes more and more frightening.  To add to the problems recent studies show that people with Down syndrome have a much higher rate of developing Alzheimer’s and as early as their forties.

According to a recent article: Increasingly, Adults with Down Syndrome Face Alzheimer’s  “Adults with Down syndrome are at high risk for developing Alzheimer’s disease, and at an earlier age than the population as a whole. At least 25 percent of those older than 40 have Alzheimer’s, and more than 50 percent of those over 60 do, compared with 6 percent of those over 60 in the overall population.” Source: National Task Group on Intellectual Disabilities and Dementia Practices

My older sister, Sara, was born with Down syndrome makes these statistics even more troubling.

I have been a vegan for over ten years and Debra, my mother has been an on again off again vegan and vegetarian for years.  Our family exercises and tries to eat healthy diets.  Like many other Americans our family tree includes diseases like cancer, heart disease, high blood pressure, strokes and diabetes.

We all realized that Sara’s best change might come from a dramatic change in Sara’s diet.

Debra was worried even before her own mother had an accident and was diagnosed with dementia.  We began looking into the topic and trying to see what could help those we loved.  We read several studies that show diet plays a very big part in disease prevention.

When my mother saw the studies about Down syndrome and Alzheimer’s she remembered the work that Dr. Neal Barnard has done on Vegan diets and Alzheimer Disease. Barnard has been researched how a vegan diet can reduce your risks for many diseases including cancer, diabetes, heart disease, strokes and Alzheimer.

Barnard writes a blog on The Physicians Committee on Responsible Medicine website. In his blog: Eating to Prevent Alzheimer’s disease he notes that a vegan diet can reduce the risks associated with these diseases.  One reference: “The Ninth Annual Conference on Alzheimer’s Disease and Related Disorders, Harvard researchers discussed the role that fruits and vegetables may play in AD. Jae Hee Kang, Sc.D., and colleagues evaluated approximately 13,000 participants in the Nurse’s Health Study.   They calculated the women’s intake of fruits and vegetables between 1984 and 1995 and correlated these values with performance on tests of cognitive function conducted between 1995 and 2003, when the women were in their 70s. Women with the highest consumption of green leafy vegetables and cruciferous vegetables—both high in folate and antioxidants such as carotenoids and vitamin C—declined less than women who ate little of these vegetables.”

So the rest of my family including Emily Ha of Ruh Global Communications have committed to Dr. Barnard’s recommended 21 Day Kickstarter Vegan Diet.  On 10/3/2014 they began a diet that is free of animal products for twenty-one days.

With some help from a health and exercise coach, Jo Beardsley at American Family Fitness we are all going to help Sara to lose weight healthily with the goal to significantly lower her risk of developing Alzheimer’s.

Sara eats a healthy diet now, but with this pledge, we stack the odds in her favor by eating her healthiest diet available.  The rest of our family is also committing to eating the same way.  We all want to see an end to these horrible diseases.

Emily will be keeping a blog tracking the journey that provides recipes for Debra and Sara to check daily with ideas for meals and other information.

The blog is at Rawesomeveganrecipes.tumblr.com and will include many raw vegan recipes too.  Join us as we focus on Sara’s journey. We also welcome your stories and recipes.