I was born with osteogenesis imperfecta (OI), a rare genetic condition that causes my bones to break easily. My parents didn’t know until I was around 9 months old when I broke my collar bone trying to roll over. Starting from a very young age, I was delayed in my gross motor skills, and my parents were originally told I wouldn’t be able to walk. However, I did learn to walk at 3 years old. Growing up and in school, I mostly used a walker and wheelchair to get around but remained as independent as I could.
As I got older, my parents instilled the importance of advocacy and building a community. Throughout all my grade school years I had several close friends that I could always count on. My parents mirrored the importance of building a community with so many friends that were practically family. The people I could also count on when I needed them.
When I went to college, my disability became a little bit more front and center. I went to school in Cincinnati, possibly the hilliest place in the Midwest I could have chosen. I only knew a couple of people and so it took me some time to find my people – who were willing to help me on occasion (especially up those hills) and reteach individuals about who I am, beyond the disability. I did though find my community and had people I knew I could count on if something happened.
What nobody tells you is how challenging it is to meet people once you are out of school – disability or no disability.
After undergrad, I decided to move to the Washington, DC area for a job. I packed up my things and moved, knowing nobody. I didn’t realize how scary that would be until after my parents left and it was just me and my new dog that I “accidentally” found at the Humane Society the week prior. Since I knew nobody, I figured the best way to meet people was through dating. I went on a lot of dates and eventually met my now husband, who also happens to have a disability. One of the stark differences we found is the difference in our idea of community. It was not something his family necessarily prioritized, while mine did. But, over the years we have learned to develop our own ideas of what community looks like for each of us and for our family. There is no one way to build a community. We took pieces of what we knew, combining it together to make our version of community beautiful and unique.
Fast forward to a baby, COVID-19, and a move to Indiana later and I cannot believe the community we have built. If you had asked me six months ago if we had found our people in Indiana yet, I maybe would have shrugged it off or said not really, however I have been proven very wrong, for the better. Community might not be there every day, but when it shows up it’s often very surprising.
In January, I had a fall that resulted in my first broken leg since I was in eighth grade. As a type-A planner personality, I panicked as to what we were going to do. Not only for me, but for my husband, who is still learning to drive, and our daughter. Life does not stop when you have an injury as an adult. However, in a state of panic I asked my sister to reach out to everyone I could think of for help. By the time I was out of surgery, our entire “help” spreadsheet was filled, and I had several text messages with people asking how else they could be there. From old and new friends, neighbors, and people I barely knew from our daughter’s daycare, we had everything covered and then some. I could not believe the amount of support people were willing to provide if I just asked.
It is hard to ask for help, especially as a person with a disability, it often feels like a burden. But that is what community is; helping each other. I know one day, someone that has helped me is going to need support and I can guarantee I’ll be right there when they need me. We all have our seasons and life ebbs and flows, but one thing can always remain constant and that is community.
:ABOUT THE AUTHOR: Jessica Minor
Jessica Minor was born with osteogenesis imperfecta. She was born and raised in Indiana, but previously resided in Maryland for over eight years until 2021. She lives with her husband, 3-year-old daughter, and 2 dogs. Since moving back to Indiana, she has worked as Director of Community Engagement at accessABILITY, Center for Independent Living. In her role, she oversees all outreach initiatives, fundraising efforts, and disability justice trainings where she works with organizations and companies on how to be more inclusive to the disability community. Jessica is also on the Board of Directors at Meals on Wheels of Central Indiana and is a member of the Interagency Coordinating Council for the First Steps program.
While in Maryland, she received her Master’s Degree in Public Policy and worked in disability and public health policy. She was also on the Board of Directors of Independence NOW, a Center for Independent Living, and Hearts and Homes for Youth.
Jessica loves connecting with the Greater Indianapolis community, building connections, and helping bridge the gap for people living with disabilities.
Image Description: Jessica is a white female with wavy brown hair to her shoulders and is smiling. She is wearing a dark blue shirt with black jacket.
I move but I am slow. The pep I once had in my step is now a shuffle. I hesitate to continue this
endless path of hopelessness. Where am I going? How did I get here? Why? I ask myself these
questions but they are left unanswered. I cannot stop to consider what these answers could be or
what they mean for me. All I can do is move forward.
Some days, I find my feet feel lighter. I can pick up the pace and wear a smile on my face. Other
days, I am on the ground crawling inch by inch. I long for what once was. When I ran with
freedom and skipped with joy, uninhibited by the weight of my sorrow and trauma. When did
this load become so heavy? Who is to blame? Why? I ask myself these questions but still they
are left to their own. All I can do is move forward.
As the mile markers go by, I pick up more weight and drop some off. The burdens fluctuate but
the pace remains the same. Even when my shoulders and hands are free, my body remains heavy.
My mind is chaotic white noise and I feel I am over capacity, incapable of finding myself. Who
am I outside of my obligations, family, and school? Where do I end and they begin? Why do I
feel I am never enough? This question stops me in my tracks.
I sound like the voices in my life who kept me small, sorrowful, and stiff. I do not like that. I
look at the road behind me, all the miles I have walked, crawled, ran. I remember each step and
how at each obstacle, each weight added, and each burden removed, I kept moving. I turn around
and stare at the road ahead of me, breathing in this moment of stillness. I want to shame myself
for standing still, but the sounds of the birds and the warmth of the breeze distracts me from
those thoughts. I should take breaks like this more often.
I take one final breath and I continue my pace once again. This time, I am walking taller and I
see a light in the distance that I did not see before. My body is still heavy and my mind is still
static, but the light provides me with strength. I see how much I have overcome and how much I
will accomplish in my future. I move forward feeling hopeful and more than enough
ABOUT THE AUTHOR: Olivia “Liv” Hope
Olivia “Liv” Hope is a senior at Purdue University Fort Wayne majoring in Psychology, minoring in Philosophy and Religious Studies with a certificate in LGBT+ Studies. Olivia has received student awards for his involvement on campus and through his community advocacy in Fort Wayne, has been invited to sit on local advisory groups and be a guest speaker on panels. He is a single parent to a 3-year old child at home and enjoys being out in nature. Because of his lived experiences in the mental healthcare system and passions for advocacy, his career plans are to obtain his PhD in neuropsychology to advance alternative nonmedical treatments for psychiatric patients.
Image description: A selfie taken by Liv in his bedroom. He has black hair with a green streak and a black nose piercing. He is smiling while wearing a black shirt with a green crystal necklace.
During a meeting on the intersectionality of race and disability, we discussed what it means to be authentic. There were many great answers. The one below was one of the most vulnerable. tt was given by Cierra Olivia Thomas-Williams:
I don’t trust myself, so authenticity feels really elusive. Is that REALLY me? I have a loud voice and excited loving personality. I need to be weird. I need to be able to make mistakes and say things that might not be right. I talk to figure things out. I need to be able to be accepted to be fully myself. I am wildly insecure and sometimes need to name that. I too need to feel comfortable to be Disabled and Miwok. Sometimes I avoid revealing these parts out of shame, but they’re so salient. When I can talk from these parts I am the most me.
We hope Cierra’s words will encourage others to consider authenticity and their relationship with it. Does it come easy or difficult? How so? Think about it and let us know! P
Cierra Olivia Thomas-Williams is a fat and sassy thoyewa (disabled) Miwok cisgender assa (woman) with salt and pepper hair. Cierra is a survivor of poly violence with CPTSD, generalized anxiety disorder, major depressive disorder and is on the bipolar spectrum. She is smiling into the camera and is wearing a pink floral shirt in the picture below.
Cierra is a Prevention Specialist at Indiana Coalition Against Domestic Violence, where she co-founded Indiana Disability Justice.
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.
