I grew up in an era wherein the technologies most of us take for granted today were unheard of. In some respects, life was much simpler. There were no menu-driven touch screens. Appliances and electronics were operated by individual buttons and controls easily identified by touch. At the opposite end of that spectrum, however, were some insurmountable barriers to the independence I longed for. As a person who is blind, there was no way to proofread my typewritten work, read my personal printed mail, or shop for groceries without assistance.
Fast forward 40 plus years, to a world in which technology and the ability to use it is a necessity. Most all of us use the internet and our smart phones on a daily basis without a second thought. We use these tools to communicate with one another, to pay our bills, track our banking information, do our shopping and fill out all manner of forms and applications; the list is endless. Though the overall convenience of 21st century technology is global, the freedom and independence these advancements have provided to the blind and others with disabilities is something I, in my youth, could have never imagined.
We are now able to proofread our own work via screen reading software, and identify our own printed materials. There are phone applications which will identify colors and currency and provide orientation and navigational information for independent travel. Clearly we have come a long way. We cannot afford to celebrate these advances, however, without also recognizing the potential dangers posed by their rapid evolution. While 21st century technology has opened many doors, it also has the power to lock us out if we are not careful. For example, it is extremely difficult today to find an appliance, be it a printer, a dishwasher, or thermostat just to name a few, with individual controls not hidden behind a touch screen. Sometimes you can create a “quick fix” by pasting a marker or a braille label on the screen. However, more and more of these designs are going to multifunction, menu driven controls.
It is not that the technology needed to make these devices accessible is not available. Companies such as Apple have proven that. Apple has built out of the box accessibility directly into its original devices. Sadly, most companies don’t stop to consider the needs of people with disabilities. They are just so far removed from our world that accessibility never crosses their minds and thus, is not a part of their proverbial game plan.
Still other companies would like to assure accessibility, but they just don’t have a clear understanding of what it means to be fully accessible. There are no published rules or guidelines as to how to implement such a design. It is this lack of direction which has prompted the National Federation of the Blind to promote the passage of the Websites and Software Accessibilities Act.
This proposed piece of legislation will direct the Department of Justice to set in place some clear cut rules for website and software design and provide technical assistance to companies as they implement these changes. How liberating it would be to access a website for the first time, and not have a question in the back of one’s mind as to how accessible it will or will not be! We need to get this piece of legislation passed, and we are well on our way to doing so .
This is just one example of the need for and power of advocacy within the disability community. Another might be the advocacy for an accessible absentee ballot for those unable to make it to the polls. There are many others which could be cited. We need to ban together and make our voices heard; advocating for a world in which there is truly “justice for all.”
So how do we do this? The most important and likely most obvious first step is to register and cast our votes. Voting for elected officials will give us the privilege to speak out against injustice. We then need to work together with all of our brothers and sisters in the disabled community to identify the barriers to our independence and join together to eliminate them.
It is so easy to become complacent; to feel that our voices won’t make a difference. We must remember however that there is power in numbers. A single voice might not be enough to bring about a fully accessible world, but if we join together in one mighty harmonious chorus, we will make a difference. It is time for us to stand up and be counted, continuing our quest for equity, and advocating as only we can.
Diane Graves entered the disability community at two years of age, after losing her vision to Retinoblastoma—a genetic cancer of the retina. Thus, it was at an early age that she became familiar with the obstacles posed solely by discrimination, and when civil rights became her passion.
When she was hired by the Indiana Civil Rights Commission in the spring of 1990, she felt privileged to have been chosen to represent the disability community, and other minorities, in their quest to ensure equality.
Since coming to the Commission as its front desk receptionist, she has advanced, and is now working as a mediator for the agency. She has also obtained a bachelor’s degree in Organizational Communication from Kaplan University and is currently working towards her Master’s Degree in Social Work. She has serves in various offices and leadership roles in the National Federation of the Blind of Indiana, and has served on the Governor’s Planning Council for People with Disabilities.
When I was in fifth grade my parents enrolled me in a Karate school so that I could learn how to defend myself. I was a small kid with a quick temper who kept getting into fights he couldn’t finish. For seven years of my youth, I spent most afternoons reciting a creed to rely on strength of the body, knowledge of the mind, and honesty of the heart to “win the battle within myself” and defend others, then developed physical and mental skills that built on those concepts. I achieved the rank of first-degree black-belt before I turned sixteen.
While I did learn to defend myself, what I really learned was how not to get into fights. My life transitioned from youth into adulthood as I moved away from home for education and career. A decade later, my karate belts were nice memorabilia of my youth to decorate my walls. It was always something I thought I would get back to when I found the time.
During my commute home from work, almost eighteen years ago, I was trapped in a burning Wrangler after a car accident. Six weeks later I awoke to learn that both of my legs had been amputated above each knee.
I remember laying in the burn unit, thinking about my youth and the effort I had put in to learning Shorei-Goju Ryu. Something valuable that I had let slip away as my career took prominence in my life but had always intended to practice again. This was now gone…taken with my legs, and the effort to learn Karate in my youth now felt wasted.
As I learned to walk on prostheses, my Physical Therapist was impressed by my balance and body awareness. She attributed this to my martial arts background. It was a bittersweet benefit left over from my training in my youth, but it relieved a little of the loss.
Adapting to life as a Person with Disabilities is hard…it’s the hardest thing that I have ever had to do. Beyond the physical actions of fighting, a lot of what I learned from Karate was about self-discipline, motivation, determination, and resiliency which helped me adjust to living life using a wheelchair and prosthetics with crutches. I was using what I had learned to reach a black-belt rank in Shorei-Goju Ryu, every day now, to deal with the emotional and physical trauma of life with a disability.
These skills, learned in my youth, helped me to access the supports needed to define and achieve an independent lifestyle as a Person with a Disability. The time spent working with a Sensei (Teacher) and other students had taught me to be open to peer support. The self-discipline, determination, and confidence developed to earn my black-belt now supported the ability to advocate for myself and others; in efforts to speak up for my own rights, and to raise Disability Inclusion and Equity through increased Accessibility at a social level, which leads to a Diverse sense of Belonging. Resiliency fed a belief that I could live an independent lifestyle and led me to define what that meant and how that would look, and to ask for the help needed to make modifications and access the resources (from disability support organizations to crowdfunding) for the assistive technology, training, and adaptations to support my vision of independence.
Many aspects of the Martial Arts have benefits for People with Disabilities. Reframing your disabilities as part of your healthy state, not something working against it, Karate provides accessible and adaptable exercise that helps develop confidence, endurance, and self-awareness. Most importantly, by practicing and adapting Shorei-Goju Ryu, I have redefined my perceptions of a healthy body, mind, and spirit in a way that is inclusive of my disabilities, and I have an adaptive avenue to further develop those aspects of life.
Karate can be adapted for any person with any disability, customized to meet their goals, and modified as the individual’s skills progress. Learning Martial Arts can help you face life with adaptability and resiliency, both of which are vital aspects of the disability experience. During the COVID lockdowns, I virtually assisted a young woman with Down Syndrome doing her senior project on Martial Arts. I demonstrated strikes (punches & blocks) from a wheelchair in Indiana, and she demonstrated kicks, stances, and movement from a classroom in Georgia. I couldn’t remember any of the Katas (choreographed forms for practice and meditation), but I could help her put the basics together. When we finished, I found myself asking the question “how do I really modify this for my 47-year-old bi-lateral above knee amputee body?”
(Image Descriptions: The image on the left shows Jeremy Warriner a white man in his mid-forties with reddish-brown hair and a trimmed mustache and goatee, in a grassy yard under the shade of trees on a sunny day with a cloudy blue sky. He is centered in the picture standing on his left prosthetic leg, with two forearm crutches planted on the ground in front of him at opposite angles, he is leaning forward and to his left side as he kicks to the right side with his right prosthetic leg. He is wearing a white gi top (karate tunic), a long fabric black belt knotted at the waist, and black shorts. His prosthetic knees and legs are a shiny silver aluminum color with ball shaped “ankles” above hiking boots on his prosthetic feet. There is a rope hammock to his left and tall trees in front of a blue house with white windows & doors in the background.
The image on the right shows Jeremy Warriner sitting in his purple rigid frame wheelchair without his prosthetic legs, on a wooden deck outside of a blue house with green trim, white windows & French doors on his right. Jeremy is wearing a black gi (karate uniform) with a long fabric black belt knotted at his waist. The two ends of the belt dangle between his thighs and there is a red stripe near the right tip of the belt indicating the first black-belt rank. He is facing forward and centered in the bottom half of the picture, with his left hand resting on the armrest above the left wheel, knuckles against his left flank, elbow bent out to his left side. His right arm is relaxed with his right hand resting on the distal end of his residual right leg. The empty lower legs of his black pants are folded underneath him, exposing the empty footrest, Velcro straps, a pocket, a small circular container, and a cupholder attached to his seat and frame. There is a tablet with a red keyboard and a legal note pad with pen on a small glass table to his left, with a power strip on the deck in front of the table. Behind him, a ramp with a railing extends down to a stone path with grass and trees in the background. Jeremy is smiling at the camera, his long reddish-brown hair falls loose behind his shoulders, and his mustache and goatee are trimmed short. Sunlight filters through the leaves of a tree above him, casting a light shade on the deck).
ABOUT THE AUTHOR: Jeremy Warriner
Whether walking on next-generation prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, founder of Walking Spirit & Spirit Therapies, LLC, charter member of the international Rotary Club for World Disability Advocates, and a devoted husband & stepfather. His passion is enhancing our communities through providing assessments, consulting, training and support on Accessible Diversity, Equity, Inclusion, and Belonging from a Disability Lens. Jeremy’s current projects include adapting Karate to his disability, co-hosting the international podcast “World Disability Matters”, facilitating the virtual Disabilities & Conditions of Aging Network in central Indiana, and writing a book about his experiences adapting to life as a bilateral above knee amputee and burn survivor. He can be reached through his website at https://www.walkingspirit.org or by email at jeremy@walkingspirit.org.
The Importance of Home Healthcare with Jody, Danielle, and Diane
Interview on January 17, 2023
This video is an interview about how three people with disabilities navigate the home healthcare system. The guests are Danielle Pitmon, Diane Pitmon, and Jody Michele. Jody Michele is the interviewer, and the translator and moderator is Cierra Olivia Thomas Williams.
The questions that are discussed are:
Tell me a little bit about yourself and what disabilities you have.
Why is home healthcare important?
What are some of the major issues that you have had over the years with your aids?
How can the system be improved?
Video Transcript
Jody
Hi. My name is Jody Michelle
And Indiana.
And today Indiana disability justice will be talking about an important topic.
We will be talking about home health care.
Home health care is when people come in to take care of the needs of people with disabilities.
So let’s get going
Cierra Olivia Thomas Williams will be the moderator.
Cierra, take it away.
Cierra
Okay, Panel. I’m so excited to hear from you.
So why don’t we start with you, Jody?
Tell me a little bit about yourself, and what disabilities you have.
Jody
Well, I’m the communication coordinator of idj
And I’m also the hub coordinator of idj.
And I have cerebral palsy and depression and PTSD.
Cierra
Thank you, Jody. Danielle, tell us a little bit about yourself, and what disabilities you have
Danielle
My disabilities I have is legally blind, borderline personality disorder.
Bipolar 2, PTSD, generalized anxiety disorder, major depressive disorder, and I also am undiagnosed as having autism.
And I think that’s it.
Cierra
Yeah. Tell us a little bit about you.
What are you into?
Danielle
Oh, about me! I am an advocate of people with disabilities, and I run my own advocacy program personally, along with my wife. And we speak on the accessibility for those with disabilities and for the ability to have the right assistance even in domestic violence. And also speaking on behalf of other clients, if necessary, to help them. And that’s pretty much about it.
Cierra
Thanks Danielle. Diane, why don’t you tell us about yourself and the disabilities that you have?
Diane
Well, one disability I have is severe arthritis. And it’s called Arthritis Mitosis. It’s in the muscles and the joints.
And I am in 24/7 all year-round pain. And it’s nonstop. And I have PTSD And anxiety
Danielle
Depression too
Diane
Depression too.
I’m not getting out as much as I would like to
But it’s hard on me.
Cierra
Do you want to share anything else about yourself?
Diane
I am an advocate for people with disabilities, and I help them figure out which building to go to or not go to, because some buildings are not so they don’t have ramps or electric doors.
You have to rely on somebody to help you at the door.
And some people don’t care. They do that, but some places they don’t even have ramps to go into. I advocate and help them figure out which building the go to, and
Danielle
what buildings are accessible.
Cierra
That’s nice.
Diane
Right
Cierra
Thank you. Thank you for that work. Okay, let’s dig into this topic. Jody, why is home health care so important?
Jody
Home health care is so important, because it allows me to live the life I want. Without home health care, I would have to live in a nursing home. And that would mean a very different life.
Because of home health care, I am able to live in my own home. And I am able to be self-employed. And I am able to be active in the community. I am able to be a part of my church family as a minister.
So that is why home health care is so important. It allows me to live the life that I want. I need people to help me out of bed and shower and get dressed.
Yes, thank you, Cierra, for asking.
Cierra
You are welcome, Jody.
Danielle, why don’t you tell us why home health care is so important for you?
Danielle
Home health care and important to me, because it gives me the independence of living in my own home which me and my wife purchased. And it allows me to have the supports when I go out in public to be able to function as best as I can because of noise problems, light issues and just all around stress and anxiety. And I also have the opportunity to be able to pick my own staff, and we’ve got 2 really good staff right now that are wonderful to have.
And it’s just necessary to make my life a lot easier to have the help that I need without getting overwhelmed and eventually ending up back in the hospital again, or ending up with having severe problems with my autism
Cierra
Thank you. Danielle. And what about you, Diane? Why is home health care so important?
Diane
That way. I could live in my own home that I love with my wife, Danielle, and she is so precious to me. And we, I enjoy having my own home and that way staff come in, help me get dress, get ready. And some days I do stay in bed because of my arthritis.
Some days it’s just so bad. But other days I do get up, do what I want, and just be who I am. And the staff that we have now, they let us be who we are. And they just, they just love us to death and we love them to death. And with, that’s one thing about staff that we like and will get along with, I really understand about our disabilities.
Cierra
Thank you. That’s really, that’s lovely to hear. And so let’s get into some of the major issues. So, Jody, what is some of the major issues that you’ve had over the years with your aids?
Jody
Because we don’t have enough people in this field, I don’t know if I would even have an aid on a particular day. And if I do, I don’t always know who that aid will be. This causes a lot of anxiety for me, because I don’t get to have a say over who comes into my house or when. I have to build my day around my staff, instead of the other way around. I don’t get to say who touches me in the most private of places. So the fact that we don’t have control is one of the main problems with the home healthcare industry.
Thank you, Cierra.
Cierra
Thank you, Jody, for sharing that. Danielle, why don’t you share with us some of the major issues that you’ve had over the years with your aids?
Danielle
Some of the issues I’ve had where we’ve had aids that didn’t believe about all of my disabilities. They didn’t believe on, on my mental health problems. And I was literally just treated like a number at times, and without any regard to me being a human being. And they basically just put anybody they wanted in here without even consulting us ahead of time in the past. But now in that area things have begun to change. And also the fact that the one problem I have with the system is they want me to actually use transportation independently and because of all of my mental health and disabilities I currently cannot do any of it without having major assistance, because I get very burned out, and I get to the point sometimes where I will shut down. Or I will just have time where I just need to get into my room and have a weighted blanket over me and darkness. And there are staff that haven’t really respected that. But now I’ve got staff that actually do respect that.
Cierra
That’s great news! Diane, what are some of the major issues that you’ve had over the years with your aides?
Diane
Well, during time Danielle was in the hospital, and I had some good staff and some bad staff. gets underpaid too. Because most providers don’t get enough pay for staff to actually come in.
Danielle
I’ll add to that.
Diane
Danielle wants to add to that.
Danielle
What it is is basically they started off pay for staff at a very low rate, like around $14 an hour, and they stick at that level for quite a while, but then over time maybe they raise the pay up for the staff. But, otherwise, it’s just so underfunded underappreciated staff and that basically they just don’t get enough money, so we have a high turnover rate of staffing.
Cierra
Thank you.
Jody
And, I do want to add most aids don’t even get $14 an hour.
Cierra
Thank you. Okay, so let’s, let’s talk about what we can do to improve the system.
So, Jody, let’s start with you. How can the system be improved?
Jody
Right now I’m getting enrolled into a program called Self-directed. This means I will be able to hire my own staff. This is a big deal, because I will be able to have a say who comes into my house and when. And I will have a say in who gets to touch me.
If they disrespect me, I will have the power to dismiss them. I will be able to have them come help me when it’s best for me. And I won’t have to work around their schedule. I won’t have to rearrange my life around the staff. And that is really awesome, that I will have more control over my life. I really believe we need to push this program so that more people with disabilities have control over their lives.
And that’s how we can make home health care better. Thank you.
Cierra
Thank you, Jody and Diane, and excuse me, Danielle, how can the system be improved?
Danielle
One, the State needs to be able to paid staffing more, to be able to retain staffing and 2 Medicaid needs to direct more funding for the staffing pay level. Otherwise they’re just gonna continue having a high turnaround in staffing. And stop having the providers have more of the money instead. That needs to change as well. Also, maybe change out some of the control problems with the IR with other reporting problems like, yeah, logbook. And you know, cause it just. It just makes it impossible for us to really be self-sufficient without being monitored every little, tiny thing that we do
Cierra
Danielle, what’s an IR? Can you explain a little bit more about that?
Danielle
And it’s an incident report.
Cierra
Okay. And how is it used against you? Do you have an example?
Danielle
It’s use to basically state that, issue is with the client rather than with any other system out there. That’s not effective. And most of the time it usually puts all the blame on the client
Jody
Hmm
Cierra
Right like they’re like, it’s kind of a way to control behavior.
Danielle
Correct
Cierra
Thank you. Diane, what about you? How can this home health care system be improved
Diane
I agree with Jody and Danielle that really does need to let clients be…
If you wanted to be treated, staff. If the staff wanted to be treated, you got to treat the client same way. You see what I’m saying?
Cierra
So increasing respect.
Diane
Right. And it’s gotta be 2 ways. You know, 2 way communication. And you got to learned to work with the client, how they move, how they do things, and they need to ask the client, what do you need help with or with cooking, or cutting up your food for ya’, stuff like that.
Cierra
I love that. Yeah.
Diane
Some can’t even feed themselves too much during, you know. It’s just sad to see staff won’t do anything for the client if they don’t want.
Danielle
There are staff that are like that.
Diane
There’s some staff are like that.
Jody
Yes, there are.
Cierra
Diane, you talked about transportation before.
Do you want to add anything about improvements to transportation?
Diane
Well for a while I used to, when we had one staff that was with us for a while, and she was able to get the van for us, and that was with another company.
Now that she’s back, for the company we’re in now doesn’t, does not have a van, so I have to rely on
Danielle
cabs.
Diane
A cab or the hospital shuttle
So the shuttle goes to the hospital and goes to the clinic.
Around the corner of us, and they will help us during that wintertime, but other than that, if it’s during the summer, I, Danielle and I walk down, or a staff walk with me to the clinic.
Cierra
Thank you. Thank you so much for this conversation. It has been so productive.
I learned so much and so I wanna go over a few of the things that that I learned about this.
So home health care is so important because the key thing is, it enables people with disabilities to live life on their own terms, to be able to and and what that does is it reduces stress and anxiety which are some of the things that you listed that you that are part of your life
And so some of the problems are that unknown people will come into your house unknown people will treat you with disrespect and touch you without consent or just touching touching you and being a stranger is just can possibly be uncomfortable.
There’s no consultations with staff changing quite often, and sometimes people can have bad staff, and there’s often really high turnover. But all of you had some really great suggestions about how things could be improved.
So we learned about a program called self-directed care where people with disabilities essentially become an employer. And so this allows a lot more control over the experiences that people are having inside their homes.
And I just wanna add to the previous one I heard learned that living independently, like having your own home is so critical to your wellness, and that home health care, and particularly self-directed care can help with that. And then one of the other key things that can be improved aside from transportation, is paying staff more.
Paying staff more will enable them, probably, to stay. And Danielle said it allows people to retain staff when people are paid more, and suggested that Medicaid it. The pay be dealt with through Medicaid, so that providers pass that money to staff and aids rather than retaining it for the company, and then, finally, that increasing respect between staff and client and client and staff are really critical ways, that the system can be improved.
And so, if anybody who is watching this right now is interested in getting in touch with any of these 3 amazing advocates, Diane, Danielle, or Jody, you can reach out to the Indiana disability, justice communications Queen, I mean coordinator Jody Michelle.
You can email her at indisabilityjustice@gmail.com, or you can go to our website and find us there at iINdisabilityJustice.org.
If you’re interested in learning more. Thank you so much.
An ink illustration of a highland calf who is galloping towards the right. This artwork contains an embedded words, “Productivity does not define your worth. Your worth is unconditional.”
About the Art
I created this shortly after my chronic lyme diagnosis and after beginning the first several months of treatment. As my ability to work and be “productive” in ways that are rewarded by capitalism have decreased, I’ve been struggling to disentangle self-worth from ideas of productivity. This is valuable and important and hard. I’m learning to listen to my body more and trust my own emotions. I used to ignore pain, fatigue, and my emotional state to force myself through work. Now if I cry, I know it’s because I’m too tired and I’m reaching meltdown status. I need to stop and rest. Let’s create a world together in which people are valued for their humanity, not their productivity.
Faerie Bear Art is an art adventure by Skye Ashton Kantola (she/they) founded in late 2016. Skye is a fat, white, trans, queer, and intersex, chronically ill autistic person. Skye’s art focuses on trauma healing and uplifting marginalized communities. 10% of all art sales are donated to BreakOUT! Youth, a QTPOC youth lead organization focused on abolition and decriminalization in Louisiana. In some cases, the profits from certain pieces are also split with collaborators.
