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Monday, June 17, 2024

Invisible disabilities

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Any person could walk past Marie Marsden and believe they know her story. Dressed in distressed jeans, a beige woven tank top and four inch heels with a purse draped over her shoulder, she seems like any other woman traveling through life’s daily work and social routines.

What makes Marsden different is the medical device she has attached to her heart—a Left Ventricular Assist Device (LVAD), a machine attached to her 24 hours a day, used to help her heart pump blood throughout her body.

Marsden, the mother of two, was diagnosed with post-partum dilated cardiomyopathy (PPCM), “a rare, life-threatening heart disease of unclear origin and is characterized by heart failure of sudden onset between the final weeks of pregnancy and six months after delivery,” according to the National Institute of Health.

This heart patient believes she was recently discriminated against by an Indianapolis Metropolitan Police Department sergeant. She said the officer told her she was prohibited from parking in a “handicapped spot” despite the placard hanging from her rear view mirror.

Marsden told the Indianapolis Recorder Newspaper during the incident, which she stated took place in the parking lot of Kilroy’s Bar n’ Grill in Broad Ripple with friends, the officer approached her stating she needed to give him the approved paperwork to validate her parking placard. When she responded that by law she wasn’t required to carry paperwork, but need only display the parking tag, the situation escalated, she said.

Although Marsden’s friends viewed the encounter as the result of racial prejudice, she believes it reveals the bias some hold against those with hidden disabilities.

“My friends were upset saying the officer didn’t want us there because we were Black, but I was convinced it was because he wasn’t clear I had a true disability,” said Marsden.

“I had my purse so he coudn’t see my equipment. I told him I’m a heart patient and I have an LVAD and a pump attached to my heart. I raised my shirt and showed him my bandaging and driveline. As I go to pull out my batteries he said… ‘I need to see your paperwork.’”

Marsden adds the officer stated, “you can park here, but you have to go home and get your paperwork first.”

At that point, she knew she had been discriminated against, if not for racial reasons, but for her disability or gender.

Seeking help

The very next morning, Marsden sought out the BMV for clarification of her placard and paperwork. Although the staff said they have no knowledge of individuals needing to carry validation paperwork, when Marsden began to explain her interaction with the officer, she was immediately referred to the agency’s government hotline.

“They’re (BMV) the government agency that approves and issues placards, so that should be common knowledge for them. I’m still unsure why they didn’t have a definite answer,” noted Marsden.

From there, she submitted a 27-page citizen complaint complete with her medical history, a cover page, table of contents and an introductory page.

“When I went to the Citizen’s Complaint Review Board, the receptionist and the supervisor said they’ve never heard of an officer asking someone for paperwork. I requested the officer to be terminated, but at the very least demoted,” she said.

Additionally she spoke with the FBI, the Indiana Civil Rights Commission and the U.S. Department of Justice in Washington, D.C. As a result of the situation being physically and emotionally draining, Marsden said she has now been diagnosed with post-traumatic stress disorder and placed on medication.

The Recorder reached out to IMPD officials, but at press time, no statements were given.

Life as an LVAD patient

At all times, Marsden has the LVAD connected to her, along with two batteries—equipment which keeps her alive.

It was July of 2002 when the then 28-year-old Marsden was caring for her two children, one only two months old, when she began experiencing extreme shortness of breath. The emergency room physicians said she had a touch of walking pneumonia. She was given medicine and told not to return for three days to allow the medicine to begin treatment.

“The second day I called a friend and said ‘I need to go back because if I go to sleep, I’m not going to wake up.’”

Chest X-rays revealed she had congestive heart failure and a hole in her lungs. She was placed in the Intensive Care Unit for 10 days and was officially diagnosed with PPCM.

During pregnancy, changes occur within the heart and blood vessels which may put extra stress on a woman’s body. The National Institute of Health said “PPCM is often not diagnosed until late in its course, because its clinical manifestations are highly variable and a heart disease may not be suspected at first. Frequent presenting symptoms of PPCM, such as prostration, shortness of breath on mild exertion, and coughing, are often initially misinterpreted as evidence of pneumonia or as physiological accompaniments of pregnancy and delivery.”

Unlike an artificial heart, an LVAD doesn’t replace the heart, it simply assists the heart in performing its normal functions. It is usually used for those whose heart needs rest after open-heart surgery or someone awaiting a transplant.

Since Marsden was once diagnosed with stage one lung cancer, she is unable to be listed for a heart transplant until she has been cancer free for five years because some antirejection medications cause cancer cells to grow and spread.

Her medical challenges have left her vulnerable to the psychological stress she experienced during the encounter with the IMPD officer, stated Marsden.

“Originally my LVAD was to be a bridge to my transplant, but now I’m afraid of the possibility of cancer,” she admits. “I’ve been through open heart surgery, lung cancer, six blood clots in my leg at once, but this has affected me in ways I couldn’t have imagined. It’s more than a violation, it’s like he took a part of me, and for what reason?”

Some might think Marsden’s assertions of psychological trauma are hard to understand, but she’s been informed it could literally have turned into a life or death situation.

Recently, a medical professional explained to her that if the officer had grabbed her driveline the wrong way, not only would she experience excruciating pain, she could die. This brought about a fear Marsden never realized she had.

“I wanted doctors to remove it (LVAD),” stated Marsden. “I’ve been comfortable with this for the past three years and doctors sat and talked to me to say, I can’t survive without it. From there I couldn’t get out the bed because I was paranoid and depressed.”

Eddie Journey of Goodpoint Counseling & Consulting Services LLC said instances like this can take an individual on a distressed emotional journey.

“Part of it is an identity issue and the difficulty is when others take it upon themselves to define your identity for you,” said Journey. “People don’t have a right to your public health information and it’s problematic when you feel as if you have to disclose it in order to gain what’s right.”

The face of disability

Deb Hileman, executive board member of the Invisible Disabilities Association Board said 80 percent of people with disabilities and qualified to use handicapped parking spots do not use a wheelchair or walker.

“The people that talk to us say it’s very distressing and discouraging that they have to show their scars to prove they can use a parking space. Our association tries to educate the public to understand ‘just because you can’t see it, doesn’t mean it’s not there.’”

Invisible disabilities include lupus, sickle cell anemia and fibromyalgia among several others.

Recently a story of a woman with fibromyalgia, a chronic disease that causes pain, fatigue and muscle stiffness, has received national attention after she parked her car in a handicapped spot and found a note on her window. The note, discovered by her son read, “Being fat and ugly doesn’t count as disabled – park somewhere else.”

“As a society we’ve gotten out of control with judging people based on their looks,” believes Marsden. “You can’t look at someone and determine what’s wrong with them or what they’re going through. You don’t know my story just by looking at me.”

Marsden wonders if she would’ve received different treatment if she were an elderly white woman in a wheelchair or with an oxygen tank. Previously, she didn’t talk about her disability, so revealing it has been challenging. She said she’s even been criticized for looking her best.

“But why shouldn’t I look good? I don’t do that for other people, I do that for me because it helps recovery,” she commented. “Just because I’m ill on the inside doesn’t mean I have to look like it.”

Hileman believes as the baby boom generation ages, as more people are living longer but not necessarily healthier, more will struggle with invisible disabilities. She also mentioned handicapped parking wasn’t available when she was growing up.

“Now we have them more and more and they’re usually full but it’s going to become an increasing challenge because there aren’t enough of those spaces out there,” she said.

Gaining community support

Two petitions have been created on MoveOn.org by Marsden, one to highlight the civil discrimination situation and another addressing hate crimes.

“Everyone I’ve talked to about the situation said they commend me for taking a stance because we talk about everything (police) do to us but we don’t come together as a community. What happened to me leads to Ferguson and Baltimore,” she stated.

Her biggest priority is gaining community support with at least 1,000 signatures. Currently about 160 individuals from 32 states and four countries are in support.

She was also encouraged when the owners of D & C Pizza showed her support. The business has agreed to spread awareness by placing information about Marsden’s incident and petition information on all of their pizza boxes.

“People don’t realize how often this happens because it goes unreported. Some people are just scared because they are afraid of retaliation. I’m not afraid, because if you come after me, I’m going to come back after you even harder,” said Marsden. “We have to stand up as a community.”

To sign Marsden’s petition, click here

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