Karen Bowman, Adapting to Life With Disability, Hist 150 Spring 2025, Conducted by Carter Bowman, March 6th, 2025.

Overview to Social Change Interview:

This interview discusses a woman’s experience with disability and disease. It has topics of disability, technology, social change, and more. This interview takes place in 2025, which is during the aftereffects of the ADA of 1990, the ACA of 2014, and varying laws aiding neurological disabilities. The interviewee discusses her experiences with these laws and how they play into her disability. For example, she talks about not having to wait five months for insurance benefits due to a law passed that waived the 5-month waiting period. The interviewee largely talks about how disability changes her life. She discusses the effects that it has on her family, on her social health, and on many other aspects of her life, such as tasks of daily living. She also speaks on the effects of insurance on her care. Insurance impacts her in big ways, both enabling and disabling her from proper care. She is denied crucial items like oxygen for example. On the other hand, she is given several pieces of technology and equipment to help her. These gifts of equipment are the large reason of why technology is an overall theme of the interview. The technology allows her to continue to do parts of her life that she lost to the disability, such as eating or typing. Without her positivity, the help of her communities, and many other roles in her life, she wouldn’t be where she is today. The interview was recorded in the comfort of her home, where she was able to fully participate, with the aid of some of her equipment. The interview also took place around midday, so she was not very fatigued.

Biography:

I am interviewing my mother, Karen Bowman. She is 56 years old and was born on December 26^th, 1968, in Martinsville, VA. She has been a self-employed freelance writer for 18 years. She was diagnosed with ALS, a chronic debilitating disease, in 2014, but her symptoms began in 2009, when she was 41. Her life has been heavily impacted by this disease as she continues to make changes to her life and routine with the course of the disease. In this interview, I hope to address social change topics in the medical area, spiritual change, and the community area. More in depth, I hope to discover how her disability has affected her in these areas. Id like to know if her disability has changed how people view her in her communities, how her disability has changed the way she views her life, and how medical services have barred or enabled her from things in life.

Research:

ALS or Amyotrophic Lateral Sclerosis is a neurodegenerative disease which attacks your motor neurons. The disease affects about 2 in every 100,000 people, with majority of cases being sporadic. Only around 5-10% of ALS cases are hereditary (Nygren, 2005). Affected motor neurons become unable to fire off signals to your muscles, which leads to weakness, fatigue, and eventually, muscle atrophy. ALS typically starts in your hands and feet progressing until it attacks the respiratory muscles, and the patient succumbs to the illness. ALS patients typically live for 3-5 years after diagnosis, but faster or longer forms of ALS exist.

There currently is minimal treatment and no cure for ALS. However, much progress is being made in the fight against ALS and other neurodegenerative diseases. In 2021, a bill was passed that established the creation of grant programs and other supports for neurodegenerative diseases (Congress.gov, 2021). This bill is aiding the research and trials for ALS. Researchers are looking into potentials cures or blocks of the disease as well. The Use of STEM cells is being considered for treatment. Stem cells are basically building blocks for whatever cell type desired, such as motor neurons. Additionally, scientists are looking for biomarkers, something to indicate the disease is present for early intervention (NINDS, 2024).

Bibliography:

National Institute of Neurological Disorders and Stroke. “Amyotrophic Lateral Sclerosis (ALS).” Www.ninds.nih.gov, 19 July 2024, www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als.

Nygren, Ingela. “ALS – a Clinical Thesis.” DIVA, Acta Universitatis Upsaliensis, 2017, www.diva-portal.org/smash/record.jsf?pid=diva2%3A165827&dswid=-3577. Accessed 13 Mar. 2025. *Peer reviewed

Quigley, Mike. “H.R.3537 – 117th Congress (2021-2022): Accelerating Access to Critical Therapies for ALS Act.” Www.congress.gov, 23 Dec. 2021, www.congress.gov/bill/117th-congress/house-bill/3537.

Transcript:

Carter Bowman 0:01
Okay, I am recording now. And the final product will be published on a public website. Hello, my name is Carter Bowman. Today is March 6, 2025, and I’m interviewing my mother, Karen Bowman. My mother was diagnosed with ALS in 2014, and I’d like to discover how themes of social status, personal outlook and government aid have been- all been affected by her disease. All right, question one. How has ALS impacted your life?

Karen Bowman 0:33
Well, my- my illness, fortunately, is slow progressing form of ALS. Most people that are diagnosed with ALS die within three to five years of diagnosis. I’ve had ALS for, or symptoms, for about 15 years. It affected my life by, gradually, it started- started in my hands, and it took away the ability to play the piano, which was something I had done all my life, or, I mean, since I was a kid, eventually, it took away my ability to type, and I’m a freelance writer, so typing was critical for me, for my job. Um, and eventually took away my ability to walk. And it’s actually affected my ability to talk. So it’s affected every aspect of my life, I think. I no longer can take care of myself. I have to have someone take care of me. I can’t do the basics of, what they call the basics of daily living. Like someone has to help me go to the bathroom, someone helps to help me get dressed, someone has to help me shower, someone has to help me eat. Those kind of things. So it’s affected every area of my life,

Carter Bowman 2:11
Right. And I know you played piano for 46 years, right?

Karen Bowman 2:15
Yeah, something like that.

Carter Bowman 2:17
Yep

Karen Bowman 2:17
I played in church.

Carter Bowman 2:19
That’s right.

Karen Bowman 2:19
Yep.

Carter Bowman 2:20
I remember that, and of course, I’m sorry to hear that. How has adapting to life with a disability been?

Karen Bowman 2:31
It’s been a challenge. When I, when I first started like using a cane or, well, actually my first assistive device that I used were leg braces. So when I would park in a handicap spot, you know, people couldn’t see the leg braces, and I didn’t look handicapped. So I was worried about what people thought of me, you know, like, “oh, there’s a non handicapped person parking in a handicap spot”. But then I had to use a cane. Then I started using a walker, and then I progressed to a power chair, which I use now. So um, what was the question again?

Carter Bowman 3:16
How was adapting to life with this ability?

Karen Bowman 3:19
So, you know, with each stage, I think I’ve adapted pretty well because I was ready for whatever assistive device I needed. But it’s hard to live with a disability. It’s hard to not be able to do things for yourself. I have to wait on someone to be ready to help me, instead of just doing what I want to do, when I want to do it. So that’s been difficult.

Carter Bowman 3:47
Yeah, all right.

Karen Bowman 3:50
Takes patience.

Carter Bowman 3:52
It does. I know that. How has the government denied you, or sorry, has the government denied you something that could improve your quality of life?

Karen Bowman 4:03
Not that I know of. I mean, I’m on Medicare now because I’m on disability so, I don’t know. But actually, I should say, the state of Virginia has helped me out quite a bit, deal- great deal, because I’m in a program through the Department of Aging and Rehabilitation Services, where I get a personal assistant, and they pay part of it, pay to pay- part of her salary. So that’s been helpful, and that has not been, you know, denying me,

Carter Bowman 4:58
Right? Um, maybe talk a little bit about about the oxygen situation in the hospital, with bringing home oxygen tanks.

Karen Bowman 5:07
Well, that was the insurance company. Yeah, that was difficult too. When I was in the hospital, I was on oxygen the whole time, and then they wanted to take- the insurance company didn’t want to pay for oxygen that because I didn’t qualify under their- their their standards. My- my oxygen, my blood oxygen saturation level, wasn’t going low enough to satisfy their- their policies, their rules. And so when I came home, I didn’t get any oxygen, and that was difficult. And I was- I had trouble sleeping. Every night I would wake up, not able- having trouble breathing, because my oxygen, my blood oxygen levels they got in so low. My doctor, my doctor was finally able to get that worked out, and I have an oxygen concentrator now, and an oxygen tank as well. And since I’ve had the oxygen, I haven’t had any trouble sleeping at all.

Carter Bowman 6:23
That’s good. All right, what treatment methods have you tried or been offered?

Karen Bowman 6:28
Okay, well, there are very few treatments available for ALS, although there are some, but, I think my doctor didn’t offer me a whole lot because they were so expensive and my- my condition was so slow progressing that it wasn’t worth it. But I did try for a short time, a new drug that came out that the FDA approved, even though it hadn’t gone through all of its proper trials. I was like, they only had two trials that were successful, and not three, which the FDA requires. So, but some patients thought they were getting benefit from it. So the FDA approved it. And then, about- I started taking it, but it had so many side effects that were negative that I stopped taking it, and actually, the third trial that they did discovered that it really wasn’t helping at all. So the FDA took away the approval, and the company stopped producing the drug.

Carter Bowman 7:38
Talk a little bit about OBI.

Karen Bowman 7:41
Oh! OBI is great! OBI is my self feeder, and OBI is a robot that- that has a spoon on it and four separate bowls for food. And I’m able to push a button and it makes the spoon come to my mouth. We teach it where to go, where- like, from where I’m sitting, and then, yeah, it feeds me.

[OBI is a feeding robot that cycles through four bowls on a plate. The user has to move the spoon to their mouth and click the “Train” button, for OBI to remember where to bring the spoon. After that, the user can press a big button and OBI will go to the desired bowl, scoop the food onto the spoon, and bring it to the mouth position.]

Carter Bowman 8:07
Yeah.

Karen Bowman 8:07
I’m also gonna be getting an eye gaze device, which will allow me to talk using- by, you know, writing sentences and saying phrases using my eyes. And it’ll incorporate the voice, It’ll incorporate my voice, because I banked my voice several years ago.

Carter Bowman 8:28
That is cool. And those were provided through insurance.

Karen Bowman 8:32
Yeah, insurance helps pay for part of that, and then, well, insurance paid, covered the OBI, the eye gaze, I’ll have a copay, but, there’s an organization called Team Gleason, that covers part of the copay for you, so I think I’m gonna reach out to them, and probably will be able to get some funding and support.

Carter Bowman 8:55
That’s awesome.

Karen Bowman 8:56
Yeah.

Carter Bowman 8:57
Any others? Wanna talk about any other aids, or like anything like that. How has disease affected your faith?

Karen Bowman 9:08
My faith. I think it’s been up and down. There are times I wonder why God chose this particular disease, because it took away my ability to play the piano, which I was doing for church, and I was doing other musical things in church that I can’t do anymore. And- and I wonder, like, why, but, but I don’t think that God gave me the disease. I think that it’s just part of living in the world that we live in. That people get diseases. And I still think, I still think that my faith is grown some because I know that, for one, there are people that have it a lot worse than I do. Then I have a family that loves me, I have a church family that loves me, we’ve had a lot of friends- I have a lot of friends that love me, and we’ve gotten a lot of support. And that- that has shown me that God is real.

Carter Bowman 10:15
Right. And you were able to do the hand bell choir for a good while there.

Karen Bowman 10:18
Yeah, I was.

Carter Bowman 10:19
So you kept your music going. How has ALS strengthened your relationships with the communities in your life, such as your church community?

Karen Bowman 10:30
Oh yeah, I think it’s really strengthened it with the church. I think it’s been, you know, well, they’ve given a lot of financial support to our family and and a lot of prayer support, but a lot of moral support through the form of meals and gift cards for meals and that kind of thing. So, I really think that it strengthened my-my relationship with that community.

Carter Bowman 11:02
Right, and when you were in the hospital, you had a lot of visitors, right?

Karen Bowman 11:05
I did, yep! A lot of people came to see me, some from church, some from my home, church, friends that I hadn’t seen in a long time. So yeah, I had a lot of friends and family. The community really rallied around us.

Carter Bowman 11:23
So they strengthened.

Karen Bowman 11:25
Yeah.

Carter Bowman 11:26
That’s really good to hear. How has ALS impacted your career and your career goals?

Karen Bowman 11:33
Well, I had to end my career early. I was a freelance writer, and I really enjoyed it, and I was at the stage where I wanted to apply for a job that they had at one of my clients, work- um businesses, but I realized that my hands were too weak and my body was too weak to be able to go to the office every day and, you know, do the things that would be required. So I had to cut short of my career and my career goals. Yeah.

Carter Bowman 12:11
So, yeah, it stopped them, but then you went to you went to get more schooling, right?

Karen Bowman 12:16
I decided to go back to school because I could- that’s something that I could do and exercise my mind and still use my gifts in writing and develop those maybe a little further.

Carter Bowman 12:30
Right.

Karen Bowman 12:30
Yeah.

Carter Bowman 12:31
How’s that been going this semester?

Karen Bowman 12:33
It’s hard! But I’m making it. I’ve done pretty well. I’ve enjoyed it.

Carter Bowman 12:38
That’s great. How has ALS affected your family?

Karen Bowman 12:43
Well, it’s, you know, of course, you know, and your brother knows that- that it’s- that mom may not live a long life, and that’s hard for you guys to to be able to live with. Seen me fall, and that hurts. I mean it hurts me, but it also hurts you in- inside. And of course, my husband, your dad, has had to really rough on our family. It’s a disease that affects the whole family.

Carter Bowman 13:34
It is. I think the family has gotten a lot stronger.

Karen Bowman 13:38
That’s true, I didn’t think about that. We actually have gotten a lot closer through it, because we value our time than we do have together.

Carter Bowman 13:47
Right.

Karen Bowman 13:47
Yeah, you’re right.

Carter Bowman 13:49
Yeah, Dad was commuting an hour a day, sometimes two and a half for Richmond to visit. And yeah, we’ve kept a family together.

Karen Bowman 14:03
Yep, we have.

Carter Bowman 14:04
Um, trying to think of some other things. How about your community with um, when we went to Charlottesville and we got the chair and the van, how was that?

Karen Bowman 14:21
Oh! that was wonderful. Okay, so I’ll tell you about that. When we- when I was getting my power chair, we did not have a- an accessible van, and we knew that we had to have a way to- to get me- to transport me in it, because that was the whole point. And so one of my ALS clinic appointments, I asked the ALS Association representative, there’s always an ALS Association representative there, I asked her if she knew of any low- low interest loans or programs that would be able to support us getting a van, and she’s she didn’t know if the top of her head, but she said she would look into it. We were getting a little nervous, because we had um, the van was coming- I mean the-the chair was going to be in in a few weeks, and so we knew that we needed to find a way to get a van. But do you know, like a van itself cost 40 to 50 to $60,000 and then getting it the accessibility modifications cost up to about $20,000. They’re very expensive vans. So about a week or two before my chair was supposed to come, the woman from the ALS Association told me that they had a van available. It was the Pay It Forward van, that someone had bought for his wife who had ALS, and after she died, he passed the van on to the ALS Association to give to someone, to a family that had ALS and- that needed it. And it was passed from family to family, like that was the- you didn’t have to pay for the van, it was just, you know, you just had to pass it on when you didn’t need it anymore. So there was a family in Charlottesville. The mother had died, and the kids had the van, and they were ready to get rid of it, and so they called me, and it was like the week or two before my chair was supposed to come in, and they said, “Would you like this van?” And so all we had to do was go pick it up! And it was great because, you know, the girl gave us the van, and then we had, we have a friend who owns a dealership, and he offered to have his dealership look it over, and they replaced some parts and got it all tuned up for us, and they- they covered half that cost, and we paid the other half, and they got the title and tags for us, and they charge us for that. Actually, they’re part of our church community anyway, and so that that ties in our church community, as well as the local community you know, of doing good things for others. But, the man who originally donated the van is a man of faith. I sent him an email because I had his contact information, and I thanked him for giving the van, and I mentioned my church family, and he wrote back, and he was just glad to hear that I was belonged to church, family and faith was a big part of his life, and that’s one reason why he wanted to give the van away.

Carter Bowman 18:10
Right. So that’s just another way of communities. You know, you don’t even know those people.

Karen Bowman 18:16
Other thing our church did. So a couple of women from the church, I guess this was last year. Did a fundraiser. They had a fundraising lunch-in for us and an auction- silent auction, and they raised $15,000 from the meal, and another $15,000 for us. That shows the love that our church family has for us, you know, and that money really helped us pay off some medical bills. That’s great.

Carter Bowman 18:55
That’s awesome. Are there any other things you’d like to touch on?

Karen Bowman 18:59
Hmm, well, I would like to say that, you know, having disabling and incurable disease like ALS, you get down sometimes. I’m not gonna lie. There are times when I get sad about it, and I wish it wasn’t this way, but, but there are other times, like when you get a van from- for free, or you know your church community throws a fundraiser for you, or your friends do a GoFundMe for you and raise money that way, that you realize that people really care about you. They bring a meal. And there’s people that’ll call up and say, Hey, we want to bring a meal over tonight. Or sometimes they don’t- if they don’t like to cook, they’ll say, “we want to go get a meal for you at Cracker Barrel. You know, when are you going to be home?”. And so, I do think that, even though it’s a- it’s a cruel disease that takes away so much of your ability, there’s been good things that came out of it. And also, I love my ALS clinic team. I have to say, I saw them last week, and of course they’ve seen me so many years. They’ve known me so long that they- they feel like friends, they feel like family too. So

Carter Bowman 20:35
That’s awesome. That’s good. Well, I appreciate you letting me interview you. I will let you know when the final product is up and ready. Have a wonderful day!

Karen Bowman 20:50
Thank you.

Transcribed by https://otter.ai

Interview and Technology Process:

This interview was scheduled and completed in person. The recording device was an iPhone using the Voice Memos app.

Transcription Process:

This transcript was preliminarily completed using the program, Otter.ai. Otter.ai provided the bulk of the transcription in under three minutes. After that, I listened to the interview while correcting parts of the transcript that Otter.ai missed. I had to use special care with my interviewees words, due to her being on a respirator. I chose to use dashes for stuttered or repeated words such as, my- my. I also had to assign correct speakers, as Otter.ai didn’t do the greatest job at that. Finally, I proof read the transcript one last time and added it in.