“If access to health care is considered a human right, who is considered human enough to have that right?”
— Dr. Paul Farmer, co-founder, Parners in Health
Studies indicate that people with disabilities are twice as likely to go without medical care as nondisabled people. And women with disabilities are more likely than disabled men to go without health care. These discrepancies can be attributed to several factors, including physical barriers, communication barriers, attitudinal barriers and social policy barriers.
Mayra Fornos’ passion for equal medical access was ignited 25 years ago when her late husband Ralph sustained a C5-6 spinal cord injury in a surfing accident. As owner of Fornos Law Firm, her commitment to removing barriers has resulted in winning access and policy changes that level the playing field and promote full inclusion. “Everyone needs to take a proactive approach to their health and well-being,” Fornos says. “Health care providers must step up and realize it is their moral obligation to provide people with disabilities the same level of care as nondisabled people.”
Fornos is not shy when it comes to educating health care providers. “They need to be reminded of their legal obligation to accommodate people with disabilities: physically, socially, and with the same dignity they offer all patients.” As a California attorney specializing in Americans with Disabilities Act claims, Fornos was included in the 2011 edition of The Best Lawyers in America. She employs lawyers with disabilities in her law firm and is adamant about equal health care access. “Going to the doctor and getting the care, equipment and service you need should be the last thing a person with a disability should have to worry about.”
Medical access issues begin with something more basic than equipment and service — public transportation.
Richard Bell, a C5-6 quadriplegic as a result of a rollover car accident, sees his internist about once every three months, a rehab physician twice a year, and various specialists when necessary. Bell never found getting to the doctor a problem until he got mugged by three teenagers on the way to an appointment in Long Beach. “After being mugged, my wife would no longer allow me to ride the Blue Line, so I had no way to my current physician.” Fortunately, Bell lives downtown and his doctor was able to refer him to a new internist and a wound care doctor, both of whom practiced in the building next to his apartment.
However, unlike Bell, most people with disabilities don’t have a doctor as a next-door neighbor. They have to travel to see a physician, and travel can be a problem. A national study conducted by the U.S. Bureau of Transportation Statistics found that 6 million people with disabilities have difficulties obtaining the transportation they need. Four times as many disabled people as nondisabled people lack suitable transportation options to meet their daily mobility needs — and it goes without saying that health care is a critical need.
Yet even when people with disabilities can physically get to their doctors, they are often faced with a variety of obstacles that prevent them from receiving the same quality of services as people without disabilities. Inaccessible exam tables, small offices and lack of accessible equipment to conduct tests are often a huge issue for people with mobility limitations.
Importance of Expertise
Carolyn, a 57-year-old wheelchair user from Northridge, Calif., avoided ob-gyn appointments because she could not get up or down from exam tables unless she took someone with her. “It was frustrating,” she says.
“The lack of suitable equipment or understanding about how to give a proper exam to someone with a disability kept me from getting the qualified medical care I deserved. It wasn’t until need forced me to go that I found a doctor who was willing to accommodate me with a lower table and an open mind.”
Carolyn, who was diagnosed with cerebral palsy at birth and degenerative arthritis at age 13, was lucky to find a medical group that was willing to work with her and provide support. “Even when diagnostic equipment wasn’t easy to use, the doctor and the staff displayed greater patience for my mobility limitations, spasms and other disability-related issues that could disrupt the exam process.”
But not all doctors have experience or expertise in treating people with disabilities. In 2009 Carolyn took a fall and was trapped without help for several hours. When help finally arrived, she was eventually transported to the nearest ER facility. “I was wedged so tight between my power chair and manual chair, all I could do was turn my head to look at the clock. I was stuck that way for over seven hours until my caregiver arrived. He immediately freed me and called the paramedics. I immediately called my regular physician and left a message. The paramedics took me to the emergency room, and the initial ER doctor concluded that despite some massive bruising, there was nothing seriously wrong. I was lucky my doctor called me back on my cell.”
Carolyn’s doctor explained the complications that might arise from someone with her disability being trapped that long. He had the ER doctor check her levels of kidney function. “My kidneys were not working anywhere near normal,” she says. “When I was trapped, I went into fight or flight mode, and my body was pumping so much adrenaline that it overloaded my kidneys. I had no water, so the load was too heavy to bear. I ended up being hospitalized to prevent any permanent damage.” Her mindfulness to immediately get her personal doctor involved helped keep a bad situation from getting worse.
Take Charge, Be Assertive
Stacy Drake, a 47-year-old woman with facioscapulohumeral muscular dystrophy, also values the importance of specialized knowledge and consistency in care. “Once I find a good doctor, dentist, or gynecologist, I stick with them for as long as possible!”
Drake was diagnosed at 14. Over the years she has had several problems which have led to a variety of different doctors and tests. Although she gets frustrated with the lack of accessible parking spaces and the small size of most doctor’s offices, she considers herself fortunate. “The vast majority of the time, every doctor’s office staff and every testing center’s staff has done everything possible to help make my visit as easy and painless as they could. I have never been anywhere where I encountered staff who were unwilling to help me.”
Despite Drake’s ease with doctors and testing facilities, she did encounter a common problem during a hospital stay. As an inpatient, she found that the bathroom in her hospital room was not wheelchair accessible. “The staff claimed they did not have a room with a bathroom that was accessible. I know others who have encountered the same problem there. It’s sort of incomprehensible, really. Because I can stand, I asked for a toilet seat riser over the toilet, explaining that would help. They said no problem, but took so long to bring one, I eventually just got in my wheelchair and told them I was going to go find an accessible visitor’s bathroom to use.”
Drake makes sure to be straightforward about her needs. “If I am seeing a doctor or getting a test for the very first time, I make a point of telling the receptionist that I am in a wheelchair. I make it very clear what I can and can’t do when I make the appointment so they know if they can’t accommodate me for some reason.”
Bell also believes in the power of letting people know what you need, as well as being knowledgeable yourself. “It probably helps me to have been pre-med in college, but my advice to others is if you are not comfortable with your doctor, they are not the only ones around. With a little due diligence and asking around, you should be able to find one better and perhaps easier to get to.”
Carolyn offers the advice her orthopedic doctor taught her. “He told me to always ask three questions: What if we do nothing? If we do something, what can go wrong? And how long will it take for me to recuperate?” My doctor always encouraged me to take charge of my health and to be aware, and if other doctors weren’t willing to make me aware, then I did not want them as my doctors!” She says it would be nice if there was a shift in philosophy and all health care practitioners were accessible to everyone, both physically and attitudinally. “It is going to happen eventually,” she says, “but it will be a fight, and it shouldn’t have to be.”
Fornos agrees. “People with disabilities should not have to battle to access quality medical services, but unfortunately they still do. One of their best weapons is to become knowledgeable about the plethora of new equipment designed to accommodate their needs. Then they will be able to assert their moral and legal right to have it!”
If you need help advocating for your right to equitable medical services, check out the resource box.
Oh, My Mammography
“Can you please stand up and step in?” I’ve been asked this question by shoe clerks and ride operators and it never really bothered me. But when asked a similar question by health care professionals, I usually get frustrated and infuriated. When I make an appointment to see a new doctor or take a test at a new facility, I make it very clear that I have a spinal cord injury and that I can not stand up — even for just one second.
My first medical testing debacle was visiting a new women’s diagnostic center several years ago. I was going to get a kidney ultrasound and a mammogram. I usually had these tests done at the hospital, but this time I opted for the state-of-the-art center that focused specifically on women.
When I arrived for my appointment, I was asked by the receptionist if I could stand. I told her no. The baffled look on her face concerned me, but I let it go. After waiting less than a half-hour, my concerns were eased as I was called into a good-sized, accessible dressing area and asked to get undressed from the waist up and put on the gown, which was open in front. I easily changed but found the opening in the front was still open, even when tied.
The exam room was a bit crowded but functional. The technician asked if I was in for a routine exam or if something more serious had brought me there. “Just routine,” I replied.
She smiled and then asked the dreaded question that ignited my apprehension — “Can you please stand up and step in?’
“No, I cannot,” I replied, trying to remain calm. “I made that very clear when I made the appointment.”
“Oh. Well that is a problem. We are all women here and we can’t possibly hold you up for the test or lift you onto the exam table. You’ll need to make an appointment at the hospital for the ultrasound and I don’t know what you can do for the mammogram.”
I sat dumbfounded, angry and unsure of what to do. After arguing with almost everyone, I was finally wheeled out of the “women’s only” center and through the hospital, clutching my open-front gown around me as we whirred by a myriad of people. I got my ultrasound, and several strangers got an up-close and personal look at my ta-tas. I never did get a mammogram.
It was years before I had the courage to schedule another mammogram. I knew I needed one but did not know where to go. A friend of mine recommended the Northridge Hospital Women’s Center. “Been there, done that,” I thought. But she assured me that it was accessible, so I took a leap of faith.
To my surprise, it was more than accessible; every machine moved in countless ways to accommodate me — in my chair. The GE Medical Systems’ Senographe machine was agilely brought to my chest and angled just right to squash my boobs and capture the images needed to scan my breasts. Like every other woman, I was able to easily access the discomfort of a mammogram. I was delighted. The whole procedure took less than 15 minutes.
A week later the results were in, and I was clear for another year — a whole year free from stressing about my next appointment.
• MAP to Access, created by the Health Access and Long-Term Services, a program of the World Institute on Disability; www.proyectovision.net/map/home.html.
• Fornos Law Firm; www.fornoslaw.com.
• GE Medical Systems’ Senographe line, accessible mammogram; tinyurl.com/senographe.
• Welner Enabled Exam Table; www.welnerenabled.com.
• Hausmann Exam Tables (see model 4460, 4465 which bills itself as “Wheelchair Accessible ADA Exam Table”); www.hausmann.com/examination_tables.html.
• MedFurniture (see Powermatic Wheelchair Accessible ADA Exam Tables); www.medfurniture.com.
• CDIHP; www.cdihp.org.
• Midmark Medical Products; www.midmark.com.
• The Women’s Center at Northridge Hospital Medical Center; www.tinyurl.com/nhmcwomen.