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Rosa Parks and the Hard Cost of Activism

Civil rights activist Rosa Parks' seemingly simple decision to keep her seat on the bus took on a life of its own. But it also largely overtook her life... and her health.

When she refused to give up her seat on a segregated bus in Montgomery, Alabama on December 1st, 1955, Rosa Parks became a civil rights icon. But it wasn’t without cost. The personal aftermath of Parks’ courageous one-woman sit-in was a bumpy ride, though, a road marked by potholes related to the young leader’s physical and financial health.

Parks’ refusal to give up her seat kicked off the yearlong Montgomery Bus Boycott, one of the first major milestones of the Civil Rights Movement. Other activists had refused to give into the racist seating system before Parks, then the secretary of the Montgomery chapter of the National Association for the Advancement of Colored People (NAACP). But it was the mild-mannered department store clerk whose case ultimately led to the desegregation of the Alabama city’s public transit system. Parks later stated that to stay focused on her purpose, she often thought of Emmett Till, the African American teenager from Mississippi who had been lynched only months prior for whistling at a white woman.

This  undated photo shows Rosa Parks riding on the Montgomery Area Transit System bus. Parks refused to give up her seat on a Montgomery bus on Dec. 1, 1955, and ignited the boycott that led to a federal court ruling against segregation in public transportation.

Activism is rarely simple or straightforward. For Parks, though she was a longtime activist, her pivotal place in history was somewhat accidental. She has said repeatedly that she did not mean to get arrested that particular day, only that she was worn down by one too many indignities of existing in public space and simply didn’t immediately move to her assigned place.

Several days after she was arrested for refusing to give up her seat, Parks went to trial. That day, the Women’s Political Council–a local activist organization–distributed 35,000 leaflets encouraging other African Americans to stay off public transit. Activists coordinated carpool systems; an alternative public transportation system–one that was by and for African Americans–sprang up overnight.

Naturally, Parks volunteered as a dispatcher, urging riders and drivers:“Remember how long some of us had to wait when the buses passed us without stopping in the morning and evening.” Soon, tens of thousands of Montgomery residents–not just African Americans–took to walking everywhere as a show of support.

Parks’ seemingly simple decision to keep her seat on the bus had taken on a life of its own. But it also largely overtook her life… and her health.

In her award-winning book, The Rebellious Life of Mrs. Rosa Parks, historian Jeanne Theoharis writes that during the bus boycotts, Parks developed ulcers. Her physician put her on a milk diet, which was very expensive; later that year, she underwent some gynecological-related surgery, adding to her mounting medical bills. Her health issues were exacerbated by burning the candle at both ends: letters that Parks wrote home detailed how much she enjoyed traveling to give speeches and radio interviews, even as it wore her out.

Rosa Parks waits to board a bus at the end of her boycott. Photo: Don Cravens

Eight months after the  bus boycotts ended, Parks, her husband, Raymond, and her mother, Leona, remained unable to find work. Harassed constantly by hate calls, the family chose to move north to Detroit, but soon, Rosa left her family and temporarily  moved to Virginia to take a job she’d been offered as a hostess at an inn at a historically black college. Parks wrote to her mother that she felt she needed to stay in Virginia to make money “but I can never tell when I will get sick or be upset about something.”

At the end of 1959, a brutal year for the family, ulcers put Parks in the hospital. The hospital bill was over $500, the same year that the family’s income tax returns show a total annual income of $661. Like today, where crowdfunding sites like Indiegogo are all too often expected to pick up the slack of a broken insurance system, Parks’ friends and family came together to raise money on the family’s behalf. Even so, the financial burden of Parks’ illnesses remained heavy.

Finally, Parks–long nearly unemployable due to her notoriety–was able to find a well-paying job. In 1965, after volunteering for his campaign, Parks secured a position with newly elected Michigan congressman John Conyers, a job that paid several thousand dollars and provided health insurance. Parks stayed on as an assistant to congressman Conyers, who is currently the longest-serving member of the U.S. House of Representatives, until her retirement more than 20 years later.

Even with stable work, she continued to struggle. In the late 1970s, Parks experienced more setbacks when she fell on an icy sidewalk and broke two bones that subsequently caused her serious chronic pain. Her husband, Raymond, died in 1977, and Parks cared for her aging mother, Leona, who eventually succumbed to cancer and geriatric dementia in 1979.

President Obama pays tribute to Parks.

Despite needing the income for medical bills and basic needs, Parks continued to donate the money she earned from speaking fees. A longtime supporter of political prisoners and an anti-apartheid activist, she helped greet South African president Nelson Mandela upon his release from prison in 1990. Her activism continued unabated, with awards and honors too numerous to name, even as she eventually succumbed to dementia. Scholarships in her name for Detroit-area youth have totaled over a million dollars, and her name has been placed on too many roadways, public buildings and public transit-related structures to count.

Rosa Parks was 92 when she passed away in October, 2005. More than a decade later, her legacy of standing for desegregation and prisoner rights continues to loom large in an era when Black Lives Matter activists put their bodies on the line, staging die-ins and filling city streets during marches to protest police shootings of young, often unarmed black men and women like Trayvon Martin, Michael Brown, and Eric Garner. Fighting for basic human rights has never been a simple or straightforward endeavor, and Parks’ legacy is enduring proof that struggles for equality are not uncomplicated acts without great if necessary personal sacrifice. Parks often worked harder than her body seemed to want to allow, but as she once told a fellow activist, “Freedom fighters never retire.”

Q&As

What To Do When Someone You Love Has Alzheimer’s

Alzheimer's is often called the "family's disease." There's a reason for that, says Ruth Drew of Chicago's Alzheimer's Association: with dementia, the whole family's in it together.

Over the last year or so, a relative of mine has become more forgetful. She doesn’t recall things people tell her just minutes before, and becomes frustrated when she feels that people are condescending to her. Yet without their intervention, she forgets things both trivial and profound–whether she has eaten breakfast, for example, or whether her aunt has died.

Although she has not been diagnosed yet, signs point to some sort of dementia, possibly Alzheimer’s. They call dementia a “family disease” because it affects not just the individual, but the family: studies show that supporting someone during this time is time-, energy-, and heart-consuming. But we’re all in it together, so while we wait for more tests, my family tries to support her as best we can.

I, too, am trying to prepare to do my part. But what can I do? What can I say? How do you help a person improve their quality of life while maintaining your own mental and physical health in the onslaught of a disease like dementia?

I didn’t know, so I asked an expert for tips on how to guide families in becoming effective, loving caregivers.

Ruth Drew, director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago

Ruth Drew, a licensed professional counselor, is the director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago. There, she leads the work of The Contact Center, a nationwide 24-hour helpline offering information and counseling to people affected by Alzheimer’s disease.

Drew has a personal interest in the work of the Alzheimer’s Association because her late grandfather had the disease. She told me more about what I could expect, and how I could be there for my loved one as she voyaged into the foggy, undiscovered and unpredictable world of dementia.

The goal is to be so much more than caregivers or well wishers for family.  What I’ve learned from Drew’s insight is to not only show love and empathy, but to also practice gratitude each day; gratitude for the one life we have, and gratitude to be a source of strength when our loved ones are losing theirs.

Why is dementia referred to as a family disease?

A diagnosis of Alzheimer’s disease or other dementia impacts the entire family. It exacts a considerable emotional, mental, physical and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief and sadness.

Are scientists finding that families who provide support and/or who are educated on the disease have a positive impact on people with dementia?

Being an informed caregiver is one of the greatest gifts you can give to a person living with Alzheimer’s and other dementias. The more you know about the disease, its progression and what to expect, the better prepared you’ll be to navigate its challenges. Since both Alzheimer’s and dementia are progressive diseases, the needs of the person living with the disease will escalate over time. Anticipating and preparing for the changes, including securing additional help as needed and availing yourself to available resources, is beneficial to both the person living with the disease and their caregivers.

What are some of the first steps a family can take when learning a loved one’s diagnosis?

Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing, not only for the person receiving the diagnosis but for their loved ones as well. There is no one right response to a diagnosis, but it’s important for family members to be supportive during this difficult time. While the individual living with the disease is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance. This can include helping a loved one identify new priorities in the wake of a diagnosis and steps you can take together to move forward, finding new ways to live a positive and fulfilling life. In addition, it’s important to discuss more practical matters such as legal, financial and long term care planning. While these conversations can be difficult, providing the person living with the disease a voice in these important issues can help guide future decisions.

What should family members be mindful of when trying to communicate with a relative who may lose their train of thought or become frustrated from the inability to communicate effectively?

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In the early stage of Alzheimer’s disease, an individual is still able to participate in meaningful conversation and engage in social activities. However, he or she may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right word. Here are a few tips for successful communication:

  • Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.
  • Don’t exclude the person with the disease from conversations with others.
  • Speak directly to the person if you want to know how he or she is doing.
  • Give the person time to respond. Don’t interrupt or finish sentences unless he or she asks for help finding a word or finishing a sentence.
  • Explore which method of communication is most comfortable for the person. This could include face-to-face conversations, email or phone calls.
  • It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
  • Be honest and frank about your feelings. Don’t pull away; your friendship and support are important to the person.

How should family members respond when their loved one exhibits troubling behavior?

When a person [with dementia] behaves in a way that doesn’t make sense… we need to remember that their behavior makes perfect sense to them.

First, it is important to remember that all behavior is communication. People with Alzheimer’s or other dementias often have difficulty communicating their thoughts and feelings in the usual ways. When a person behaves in a way that doesn’t make sense to a family member, we need to remember that their behavior makes perfect sense to them. Instead of dismissing the behavior, do a little detective work to try to understand. People with Alzheimer’s sometimes become anxious or aggressive. They may repeat themselves or withdraw from activities they used to enjoy. When this happens, try to figure out what they are communicating. Are they in pain, cold, hungry, sad, bored or lonely? Are they bothered by something in their environment? Sometimes we can decode the situation and help. Even when we can’t figure it out, we can respond with kindness and respect knowing that it is always worth the effort.

How important is it to establish a daily routine, or does it depend on the person and diagnosis?

A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Before making a plan, consider the following:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or “sundowning”

Make sure to allow for flexibility within your daily routine for spontaneous activities. As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Are there any specific activities a relative could to do with a patient with dementia that you’d recommend in the quest to delay the progress of the disease or improve their condition?

A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves.

Staying physically and mentally engaged is an essential part of living. A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation. Focus on activities the person has always enjoyed and adjust, as needed, to match the person’s current abilities.

For small families, those who live far away, or those who are unable to provide a lot of support, what are some resources available to help improve the quality of life of a person dealing with dementia?

While long-distance caregiving can be challenging, there are resources to help. Learn about what is available in your community by contacting your local Alzheimer’s Association at 1-800-272-3900 or using its online Community Resource Finder. You can also use Alzheimer’s Navigator, a free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.

Creative Commons photo at top shot by Jeremy Hiebert.

Q&As

I’m Still Here: What It’s Like To Live With Dementia

In a brave and important interview, Kim Ovard opens up about her own diagnosis, and challenges assumptions about what people with dementia are capable of.

Kim Ovard will tell you she has dementia. She will tell you about the embarrassment she feels when people disbelieve her, insisting that she “looks okay.” She will tell you about the guilt that haunts her when she considers the burden that this disease will eventually impose on her family. She will tell you about the fear she carries each day as she anticipates the morning when she will awake fully entrapped by this disease, no longer aware that she has it. And she will tell you all of this with full knowledge of the kind of pre-conceived judgement it invites – after all, this is coming from a person that isn’t “all there.”

Kim Ovard and her dog, Friday.

There is an obvious question here about why a person suffering with dementia would open themselves up to pain by rehashing the nuances and inevitabilities of this condition with a practical stranger. For Kim, there’s an easy answer, “I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else.”

Kim Ovard is 52 and lives with Lewy Body Dementia. Together with her husband and her Internet-famous bull terrier named Tugg, Kim spends her days raising awareness for Alzheimer’s and other social issues ranging from bullying to animal rights. A former animal control officer turned social activist, Kim sat down with Folks to discuss the realities of life with dementia and the hope she finds in the mere anticipation of another day to live.

This is a difficult and even embarrassing question to begin with, but how is an interview like this possible for a person with dementia?

That question is why this story is important. That’s how everyone feels, but that fear prevents us from ever asking. People are afraid to talk to us, and so we lose friends. With dementia, it’s day by day and hour by hour. It’s tough to know what to expect.  A lot of times when I go to speak in public, I want my husband around because he can pull me out if I can’t find my words or I keep repeating myself. Honestly, agreeing to something like this is scary. Yet I’m determined to help, so let’s do this.

People seem to have a specific notion of what it means to have dementia, what’s the reality?

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot, as though I am not here. I constantly get, “You don’t look sick, everyone forgets things.” Each day, I’m afraid to tell people how I feel. Usually, they don’t want to know or simply won’t believe me because I look okay.  People pull back because it will hurt to lose me, and they treat me like I can’t understand anything anymore. My family was in denial, and they still kind of are. They don’t want to believe this is happening.

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot…

It seems inhumane for someone to make you convince them that you’re actually sick. How do you respond to disbelief?

That is a funny thing. I don’t fight them. I’m 52-year-old and I do more than most people. Honestly, I just don’t push it. If they’re around me enough, they eventually see it. I don’t look for sympathy.

Could you tell me a bit more about why is it scary to tell people the truth about your condition?

Imagine if you, a writer, told me that you had dementia. Now I’m wondering if you’re going to get my story right. I’m wondering if you’re going to remember my words. As soon as you’re diagnosed, people treat you like you don’t exist and talk around you. Honestly, they don’t know any better, they go by what they read on the internet. I just want people to know that I’m still here.

Could you unpack what you mean by “I’m still here.” There seems to be a lot of meaning embedded within it.

There’s a lady that I know who is familiar with my diagnosis, and she thinks I’m sicker than I am. I still function. I still work. Anyway, we were in public at a comic con with my dog and she was there and came out in front of the booth and asked me how traffic was that day. We’re in a big convention center and I said that it was busy. The next thing I knew, she walked up beside me and took me by the shoulders and shook me. She said, “Kim, I’m talking about the traffic outside.” I had answered the question right and I had heard the question. Yet because I have dementia, she assumed I was off. This was someone I knew. This is the kind of discrimination that we face. It’s really hard. I want to remind people that I’m still here!

The scariest thing for any of us is that we might lose our ability to communicate that fact, but we’ll know what’s going on. It’s scary to be us, but then it’s scary to know what I’m going to do to my family. That’s the worst part. But I’m still here.

You’re most afraid of what this will do to your family? This seems counter-intuitive. Haven’t you got enough to be concerned about?

It’s true, the worst part of having dementia is not what I face, it’s the knowledge that eventually I might be bed-ridden. I’m afraid of what that will do to my family. They’re going to lose me, so I try to protect them by hiding what’s going on. You’re right, common sense would say that everyone should take care of me, but I work hard to protect them. They want to fix me, but they’re slowly realizing they can’t help me.

There are states that offer assisted death, which I couldn’t do it because of my faith, but I’m not sure it’s a bad thing. If I’m going to be a vegetable, I’m not sure that I would just rather die than put my family through all of this.

It’s scary. Could you imagine losing yourself?

I can’t. That terrifies me. Before your initial diagnosis, did you know something was wrong?

When dementia hits, it starts with simple things. We know something is wrong, but pinning down the symptoms is like playing whack-a-mole. Every day is different, so it’s tough to put your finger on it. All we know is that we’re not ourselves anymore. We can’t pay the bills, even though we have all your lives. We can’t find words, everything becomes a “whatcha-ma-call-it.” We get lost on roads that we have driven all our life. We can’t find our way in a building or out of a simple parking lot. We become a kind of masquerader, where we try to hide the mistakes we’re making. Of course, people notice but we find a way to laugh it off. By the time all this is happening, if you’re like me, you’re in the best time of life.

When dementia hits, it starts with simple things… pinning down the symptoms is like playing whack-a-mole.

Did you tell anyone?

I only told my husband but only after I had to.

Once you were officially diagnosed, how did your friends and family respond?

Sadly, we lose friends. Again, this disease is hard on our loved ones. I do a lot on Facebook, both with my dog and advocating for people with Dementia. Anyway, I had this one lady contact me and say, “I can’t read your work anymore because it breaks my heart that I’m going to lose you.” Those were her feelings. Can you imagine my feelings? I want to talk from the inside, but people are afraid to listen. It’s no wonder we’re quiet.  

I noticed that you say “us” and “we” when talking about dementia. Why is that? Do you feel like you have a responsibility to speak for others?

I’m just that type of person. My world has always been “we” or “us.” I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else. What matters in the work I do is changing the lives of people like me. My world entails walking out in life and seeing who I can help. I wish the world thought this way, because it would change. Every day I ask who I can help. People with dementia are so often afraid to talk about their conditions. A lot of them say that I’m brave to talk about it on Facebook. For me, I’ve got this, so I want to tell people and show that I can still do things. Yet others are afraid that they’ll lose their jobs, they’ll lose their families, they’ll lose their friends, they’re afraid people will think they’re dumb. I try to speak for them.

What advice would you give someone that has had a loved one diagnosed with dementia – how should they approach them?

You just need to speak openly to them. Allow them to get their fears out there, and this can be scary. They’re already hurting, they’re coming from a place where they’re losing everything they know. Help them. Talk to them. Don’t say, “do you remember that or do you do that?” If they’re calling it a whatcha-me-call-it, try to help them locate that word. If they repeat themselves a few times, there’s no need to correct them. Really, you just need to be there with them. In the stages that they can’t talk, don’t assume that they’re not in there. There’s the language of hugs. Just sit there with them. They’re in there. Just love them. I guess that’s the most important thing.

Could you give me a window into daily life with dementia?

“I’m still here.”

Each day, each hour it changes. Let me give you a bit of my day. At night, I have night terrors from hell, alternate reality that I act out and wake from not knowing what is real. The dream is just like reality only I can’t escape the horror. I try as hard as I can to be the old me, but I have a new normal daily. I might have Parkinson’s symptoms, tremors, wobbles, walk slow, stiff. My ass leaks. I can’t find words or always understand what someone is trying to say. I can’t control my blood pressure, or anything my brain does because I’m just at its mercy.

I get angry. I curse, and cursing is not me, but I know my disease is acting up more than usual when I do. I lose empathy, I find the wrong things funny, and I say things that don’t know I’m saying.

How do you maintain a sense of identity?

This disease is erasing me from myself. My fear is that I will be trapped inside of myself and not be able to communicate, and yet I will know what’s going on outside of me. Imagine hiding all this and more. But if you’re having a good day you can do things like this interview.

This disease is erasing me from myself… But if you’re having a good day, you can do things like this interview.

How do you fight back against this condition?

For me, fighting back is talking and not fearing what will be thought. I speak to many people with this disease. We are in here – still inside our bodies and minds – but treated as though we are not. That being said, I still don’t tell everything for fear of what others might think. I’m still learning to let it all out.

In the midst of this, where do you find joy?

I have found that I am a hope giver. I find joy every day. I believe in God. I see miracles and beauty every day. Life is beautiful. I wish people didn’t take it so for granted. When you leave home tonight, pay attention to what’s around you. Open a door for someone and have them smile. I just get a kick out of life. I think that those of us that are dying sometimes live more than those of you that are living. It’s just beautiful. My joy has to do with who I can help. I wake up every day and thank God for giving me another day that I can help someone. I wished people just lived. I don’t get too down about things. We’re all going to die. I’m going to enjoy mine.