Spina bifida also known as split spine. A birth defect in which a developing baby’s spinal cord fails to develop properly. There are fewer than 200,000 cases per year. There are three types of Spina bifida occulta also known as hidden spina bifida, myelomeningocele and meningocele.
Occulta- Also known as hidden spina bifida. It is when a baby’s back bone doesn’t fully form in pregnancy. The baby is born with a small gap in the bones of the spine. Spina bifida occulta is common and happens in 1 in 10 people.
Meningocele- A birth defect in which a developing baby’s spinal cord fails to develop or close properly in the womb.
Myelomeningocele- This is the most severe causing paralysis, bowel and bladder difficulties.
Hydrocephalus- Water on the brain.
Shunt- A narrow piece of tubing that is inserted into the brain in the fluid filled ventricle. The tubing is then placed most commonly in the abdomen but can be placed in the heart or lungs.
Hello, my name is Courtney I was born in 1989, and I was immediately rushed to Riley hospital in Indianapolis due to a hole in my spine. I have Spina bifida myelomeningocele, the most severe type causing me to be in a wheelchair for the rest of my life. I have had multiple surgeries due to my disability: 4 back surgeries, bladder and bowel augmentations, 3 shunt replacements just to name a few. But I don’t let my challenges stop me from doing the things I like to do. My hobbies are hanging with my fiance Brian, playing with our son, art, writing, and listening to music.
I will say this: Being a disabled parent to “Spider-Man” has many challenges. . The most challenging things are lifting, bathing, and dressing him. But there are many rewarding times in being his mommy, such as his smile and him waiting for me in the morning for snuggles and our play time. Yes there are many struggles, but Brian is always by my side as a wonderful support. He has built a carrier that attaches to my electric wheelchair so on walks, in stores, at the park and many more places, I can put him in the car seat and wheel him around that way.
I also have anxiety and depression so some tasks are harder to handle than others. The biggest task that is hard for me would be large crowds. I have trouble with severe anxiety speaking in front of people so writing is an outlet for me to deal with my emotions. But in the last few years Brian has been working with me on getting over my fears.
“I hate going to the airport. They always want me to use a wheelchair and it makes me feel so old,” said my 87-year-old former neighbor the first time we spoke on the phone in over fifteen years.
She, of course, knows that my brother and I both use wheelchairs because of a car accident when we were children. That didn’t stop her from saying something that betrayed a very destructive underlying belief about disability: that disability—or the appearance of disability—is shameful and must be fought against as though you might otherwise drown, even if that resistance is ultimately to your own detriment.
The cultural pressure to be strong, able-bodied, independent, free from illness, and perpetually young is damaging to society in general. I call this tendency to emphasize or even playact ability in order to fulfill the cultural expectation of what it means to be a relevant, whole human being “toxic capability.” Such a term is valuable because, in naming toxic capability, we can become better at recognizing it in ourselves and in the world—and recognition is the first step toward eradication.
Very often, a person exhibiting toxic capability resists or refuses care or assistance they actually need for their health, mobility, pain management, peace of mind, or access to the larger world. They may choose to do without rather than suffer the “indignity” of appearing weak or disabled or of being confirmed as disabled—sometimes just in their own mind. Even those who do accept the care or assistance they need may only do so with a cloud of shame surrounding that need.
My own mother, a fierce advocate for people with disabilities, resisted using a cane until long after she needed one. Her identity as an able-bodied person continued to fracture with age, and yet, internalized ableism made her reject a disabled body as her own.
Internalized ableism is the subconscious, internal preference for able-bodied people over disabled people. No one is immune from this type of bias, including friends and family of disabled people and even including disabled people themselves. Often, this internalized ableism is externalized in the form of inadvertent microaggressions that reinforce the notion that, in the hierarchy of ability versus disability, disabled people like myself will always be at the bottom—and there’s no elevator up.
For so long, my mother had been the mother of, caregiver to, and advocate for people with disabilities, while never wearing the mantle of disability herself. But when she finally accepted her identity as a disabled person, she was able to move around with much greater ease. Soon, after owning one cane, she owned five, with different designs, like pink roses and iridescent butterflies. Beautiful and practical, these tools empowered her to walk safely again. Her life was made better by acknowledging and honoring her status as a disabled person.
It’s no wonder my mother struggled with her shifting identity. After all, we observe from a very young age that society prefers and caters to able-bodied people, while often pitying, excluding, mocking, and patronizing disabled people. We learn well the subconscious lesson that ability is best and resisting its inverse is strength.
Ironically, accepting help, care, and accessibility tools actually requires a strength that many people don’t have. This is real weakness: to deny the needs of your body and mind because you can’t bear having those needs in the first place.
You may think you’re only applying these “standards” to your own self and body, but they have a way of seeping into how you view others too. Just a few ableist microaggressions I have personally experienced include a family friend seeing a picture of me and my sister and exclaiming with a smile, “You can’t even tell she’s in a wheelchair in this one!” Or a distant relative saying to my sister, “I don’t know why Ashley keeps referring to herself as disabled. I don’t think of her as disabled at all.” Or an able-bodied stranger in a coffee shop telling me, “I’m praying for you to be whole again.”
I am whole and I am disabled—and I reject the ableism that makes someone try to re-form me in their image.
Toxic capability harms me and other disabled people and it keeps able-bodied people from better health and better access to the world and the things they need and enjoy, and it sabotages them from having more equitable relationships with marginalized people.
Just like other internalized biases, it is important for us to do a better job of recognizing internalized ableism and toxic capability in ourselves and others—and to analyze and interrogate those biases.
Think about your own life. The times you decided you didn’t need the blood pressure medicine your doctor prescribed. The times you pushed past your healthy limits while working out so you could prove how strong you were. The times you refused assistance from a friend because you pride yourself on not needing anyone to help you. The times you avoided addressing your mental health issues. What is at the root of all of these refusals?
This may be a difficult question to answer, and it may reveal uncomfortable truths. Perhaps you simply think of yourself as stubborn and even regard that stubbornness as a virtue; in reality, that obstinacy is often another artifact of our culture of toxic capability.
When loved ones claim to be allies to disabled people, but then refuse basic care, medications, or even standard-issue help from other human beings, their actions say something they probably can’t articulate in words: Somewhere, deep inside, they, like so many others, view needing help as weakness and feeling or being seen as weak is loathsome. As long as they get to be the hero helping the disabled person, disability is acceptable—but no one person is always the hero and no one person always needs saving.
My former neighbor didn’t want to use a wheelchair because she thought it would make her look old, even though she was old. My mother refused to use a cane for a time, even though her body couldn’t do what it used to do. In trying to avoid their weakness, they slammed headlong into it.
My hope is that we can be more aware of our own actions and intentions and how they may be revealing our internalized ableism. That we will work to reject our culture of toxic capability. That we will learn to be less afraid of needing help, getting older, taking medicine, and using mobility aids. And that we will see it takes incredible strength to understand who we are, acknowledge what we need, and accept those things with grace.
ABOUT THE AUTHOR: Ashley Caveda
Ashley has pale skin and long brown hair. She is wearing a black top that is a bit off the shoulders. She is wearing pearled, dangling earrings. Her hands are folded in her lap. She is smiling broadly. There are closed-up trees in the background.
At the age of six, Ashley was in a car accident that left her paralyzed. As an adult, she often uses her writing to grapple with the different facets of disability, from the difficult to the hilarious.
Currently, she lives in Indianapolis and serves as the director of communications and events at a local church. She is also a freelance writer and independent contractor who loves assisting organizations with meaningful missions.
Ashley received an MFA in creative writing from The Ohio State University. Her work has appeared in Monkeybicycle, Superstition Review, The Southeast Review, and Ruminate Magazine.
The video starts with a woman holding two blank pieces of paper taped together. She has a black tank top, and all that is seen is her torso and arms. As she is crumpling the papers, phrases appear on the screen. They are in a bulleted list here to signify when one phrase ends and the other begins.
You’re crazy
I don’t think you should hang out with them.
Next, the word “wh*r*” appears.
I’ll get you back
all your threats
assault
stalking me
isolating me
hiding my meds
no one will ever love you like I do
You’re a burden
By this time the papers are in a ball.
Now she is uncrumpling the papers to reveal family photos with the words, “I AM A Survivor,” written in red below the pictures.
The pictures are an adult female in a black tank top snuggling a child while writing something, a mom holding a newborn baby, a male child about 4 or 5 held close to a man’s face, and two wedding pictures.
At the end there is a black screen with, “Video Art by Luna Eversong-Kloss.”
ABOUT THE AUTHOR: Luna Eversong-Kloss
Luna Eversong-Kloss is a tattoo model, avocate, write, and mother of two. She also has cerebral palsy.
Luna is standing with her crutches. She has tattoos and a lip piercing. She has long brown hair’with blonde streak. Her head is cocked, and she is smiling broadly. She is wearing a black shirt with skulls and flowers.
CONTENT WARNING: This post discusses sexual and domestic violence.
Luna was born with Cerebral Palsy Spastic Diplegia. Luna uses a walker, crutches, and a power wheelchair to help with mobility.
She also deals with borderline personality disorder and CPTSD due to trauma throughout her life. She became pregnant with her son in 2017 after being raped while trying to leave a violent partner.
The unique challenges she faced while trying to escape her abuser really highlighted for her the disparities and lack of resources available not only for disabled individuals but disabled survivors of domestic violence.
Her experience has really inspired her to try and discover ways in which she can bring these disparities within the disabled community to the attention of others, start discussions, and hopefully inspire much needed changes. These changes are needed in order to better support, not only survivors of domestic violence, but people within the disabled community.
Keep reading below to hear more about her story and personal experience surviving domestic violence.
Throughout my journey of escaping domestic violence with a disability and going from a victim to a survivor, I have faced and had to overcome many unique challenges. As if being a survivor of domestic violence isn’t challenging enough already, the obstacles that I faced when escaping and getting back on my feet were compounded by the fact that I have a physical disability. In my experience when I was seeking help to not only escape, but to also recover from my abuse, the services available in my area could not fully accommodate me as a recovering victim of domestic violence. They were not able to accommodate me as a person with a disability.
People with disabilities face unique challenges on a daily basis not only because of their disabilities. An even larger contributing factor, in my opinion, as to why daily life can be so challenging, is because we have to navigate and live in a world that, at the end of the day, isn’t designed with disabled people in mind.
Depending on where you live in the United States, services for persons with disabilities and their daily lives and situations can often be bare minimum at best if they’re even available at all. And when it comes to domestic violence, this is an even bigger issue when you consider that resources for victims of domestic violence are already limited, even for those without disabilities. Shelters can fill up very quickly, and some of them require you to be able to live fully independent in order to stay there. In my area, from my experience, I would say most of them have this requirement. Assistance programs like HUD/Section 8, which are affordable housing resources for low-income individuals and families, have limited space, and they do not prioritize disabled victims of domestic violence at all. The housing program where I am from, prioritizes a) elderly on social security, b) low-income families with children, c) able-bodied and disabled, d) pregnant women, e) younger, low income, disabled individuals with no kids, and f) able-bodied, low-income individuals. Not only do these housing assistance programs fill up fast, but there is often a very long wait list. If you’re a disabled person, depending on the disability, there’s a good chance that you are on low and fixed income, which makes it necessary, yet difficult, to find affordable and manageable rent without being on some sort of housing assistance. If you’re a disabled survivor of domestic violence with low-income, like myself, these limited space programs with long wait lists, that don’t prioritize younger people with disabilities very well, let alone survivors of domestic violence, can be financially devastating and even life-threatening for the disabled victims of these situations.
I was with my abuser from 2015 to 2017. The majority of that relationship was extremely abusive. He started abusing me, psychologically, sexually, and physically, pretty early on in our relationship. I would say I started to notice that I was being abused maybe about 3 months in. He had come home from work one day, wanting to have sex. Now this isn’t my first abusive encounter or abusive relationship, as a result of trauma over the years I developed a condition that can sometimes make it difficult and even painful to experience sexual penetration. It’s kind of like an anxiety response from my understanding but I don’t have much control over it. Anyway, I had told my abuser that day when he expressed his desire to be intimate, that I didn’t feel I was able. Because of my condition, I already felt physically uncomfortable. He kept pushing and pushing even though I kept resisting both verbally and physically. He ended up overpowering me and raping me. When he saw how upset I was, he apologized, said that he didn’t mean to, and that he would never do it again. That was a lie though. I was often coerced and pressured into sexual encounters that I would express I didn’t want to be in. When I expressed a desire for him to stop, he would not. There would be periods of time in our relationship where I would be sexually abused on a daily basis, sometimes for weeks. I would experience a lot of psychological abuse, and gaslighting. He had me questioning my own reality often times. I would even experience physical abuse, be locked inside of our house, and pinned to the ground if I attempted to leave the house or put any physical separation between us during an argument. The times I did managed to leave the house he would stalk me or call me and make threats.
There was a lot of messed up things going on in our relationship for quite a while, and if I’m being honest, I would say that there were signs of his abusive and controlling behavior even before we got together. If I had the money or resources much earlier, I would have left a lot sooner, but I did not. I also had this crippling fear of being homeless again. Just a few years prior to meeting him, I had escaped a previous abusive relationship where I was brutally sexually assaulted. As a result of that first escape, I ended up being homeless for 2 years. After getting out of that situation, the thought of ever having to go back to homelessness was terrifying enough to convince me to stay with him for a total of 3 years, when it was all said and done.
I made my first attempt at a solid escape, once I was finally able to save up enough money, in February of 2017. That definitely wasn’t the end of the story. He was very upset and retaliated by raping me, which is how my oldest son was conceived. I tried to stay away from him as much as possible. But between needing help getting to doctor’s appointments, and as I got more and more pregnant, I became less and less able to safely care for myself, I needed help. The only resource that I was aware of, at this time, was applying for Section 8. I didn’t know where or how to access resources, to help me safely care for myself while pregnant. And those I reached out to didn’t know where to point me either. So ultimately about halfway through my pregnancy I had to invite my abuser back into my life, because at the time I really didn’t have anyone else that could do what I needed.
I made an attempt at another escape in 2018. I moved again, to a two-bedroom apartment with my 3-month-old son. I was on a fixed income of $750 living in a $480 apartment that did not include utilities, I was still waiting to hear about the housing voucher program. I was actually pretty far down on the list, until after I had my baby. Actually having the baby bumped me up. But not enough, the wait was still way too long. I tried and tried to keep my abuser at a distance as much as possible, but he definitely did not respect boundaries. I was desperately struggling to find resources that would accommodate my situation let alone even accept me. This forced me to depend on my abuser for things like rides to the grocery store, to doctor’s appointments, etc. He was using these opportunities to continue to exert his control and abuse me.
I had people that I was reaching out to for help, but the majority of them just couldn’t wrap their head around my situation. I was working with a family program at the time. The family specialist I had that would visit my home, knew of my situation, but she kept trying to convince me to cut my abuser off completely and then seek help. She couldn’t understand why I wasn’t able to do things in that order. She kept trying to compare my experience with domestic violence to her own experience with domestic violence. Because she is able-bodied, she just could not factor in how much me being disabled played into the severity of the abuse that I was experiencing, and why it was so difficult to escape my abuser completely.
I finally found a way to make her start to understand that I could not leave my abuser until I got services to compensate for the ways in which I had to be dependent on him. She got me in contact with a local service that primarily assist disabled elderly people. This was my first encounter with ageism. I had to go through an interview in order to be approved for these services. The woman who interviewed me showed up at my home unannounced, and my abuser happened to be there that day because I had needed his help with something. During the interview she made several derogatory comments about my age, and already let me know that she wasn’t sure if I could even be assisted by them. This was due to my age, the fact that I had a child and that most of the people they serviced are disabled elderly. She was also letting my abuser have input on what my needs were, despite the fact that my abuser and I were never married, and I had made it as clear as I could, even with him in the room, that he and I were not in a relationship. I was seeking services so that I didn’t have to be dependent on him so I could fully leave the relationship. Yes, if you’re wondering, what this woman did is very illegal. After the interview I was immediately denied services through this company. She even contacted my family specialist, and made claims that I had people helping me, (abuser) claimed that I was uninterested and didn’t seem to have a need for services.
I don’t know about other areas around the country, but I know at the time where I was living while going through all of this, the type of services that I was seeking are pretty much exclusively only available to elderly disabled people. I remember getting so frustrated because it seemed as though people, at least in this community where I was from, didn’t want to acknowledge or couldn’t wrap their heads around the fact that young people can be disabled as well. This community even had a couple low income and even assisted living apartments, but again these places we’re really exclusively available to the elderly on social security, which is different than the social security that I was receiving. Not only did I have to battle the obstacles of domestic violence, but I also had the obstacles of both ableism and ageism in my way when it came to seeking services to get away from my abuser. I remember during this time getting so discouraged that I almost gave up, and I believe I would have completely given up and given into my abuser if it wasn’t for CPS of all things getting involved.
I had a wonderful social worker, and she was the first person, in the four years that I was going through this ordeal, that immediately and fully recognized that I was being abused. Not only that, but she was probably the first person that actually took the time to listen to what I needed while taking that information to work with me instead of against me. She was able to get me involved with a family transportation program at Centerstone. She helped to find resources for me to get an in-home help aid. The transportation services that I finally had access to took some time to actually be useful. Once I got the right family support person, that was a big step in getting away from my abuser, because that’s one of the things that I depended on him for the most. Now I know that there are transportation services everywhere including services for the disabled. But a lot of these services, although they may be more easily and publicly accessible they have limitations, and unfortunately having a child with me created limitations that made these public services inaccessible.
Finally when my son was nine months old. I got a call from the OVO housing authority saying that they had a housing voucher available for me. I was told I had 60 days to use it. Now in order to use these vouchers, you have to save up the money for the deposit, and wherever you’re planning on moving has to meet certain standards and requirements by the program’s rules to use your voucher at a particular location. This was my next obstacle to overcome. I was living on very limited income and over 80% of my check was going to rent. And although the landlord I was renting from at the time was very eager to take the voucher, the place he had me living in was nowhere near up to the standards of the housing program, there were a lot of safety issues. He also refused to make any improvements to the apartment in order to be accepted as an approved location by the program. I had 60 days to use this voucher, and not only was finding a location difficult, it had to be within a certain budget that was not even disclosed to me. Also with my rent taking up as much of my income as it was, saving up the deposit was nearly impossible. Luck came my way, and I was able to use my voucher at a place that was safer and much more suited to my needs. Getting there was definitely stressful. I almost ran out of time and lost the voucher.
Now I had reached the point where my transportation issues were resolved for the most part, and now I finally had access to affordable rent. There was no reason to need to be financially dependent on my abuser in order to get bills paid and things like that.
I was finally in a position where I could actually leave and never look back. And that’s exactly what I did. I was able to get a temporary restraining order against my abuser too. He wouldn’t stay away from me before I moved so I had no choice. This is how I got involved with my local domestic violence program. They were the second group of people, as far as I’m concerned, to have saved my life. If it wasn’t for them I don’t know if I would have had the know-how or the courage to get a restraining order and finally stand up to my abuser. They also helped with going to court to get it extended and being able to testify and tell the judge everything that was done to me, well almost everything. It’s been a long, hard journey especially with obstacles, getting legal counsel, having to go to court and testify, and get things modified. I am now, today, married and living in a new town where I don’t have to worry about running into my abuser, and I have full legal and physical custody of my son. I’m so thankful for the people that actually listened and helped me get here.
If you read my story, hopefully it’s clear through my own personal experience where I think there are significant disparities when it comes to helping disabled victims of domestic violence. I didn’t share every piece of my journey, but hopefully I shared enough so that you can see where we can often fall through the cracks. That being said, I still want to take the time to be more specific.
First and foremost, there needs to be widespread education on how domestic violence affects the disabled community. I believe it needs to be understood that disabled domestic violence victims in a lot of ways can’t afford to be treated the same way as able-bodied domestic violence victims. In order to get proper help through these organizations our disabilities and limitations need to be acknowledged so that they can properly be accommodated. As a society we need to figure out a way to more quickly and efficiently help disabled victims remove themselves from these situations as soon as possible.
When it comes to disabled victims of domestic violence, we need to do more to help them than just hand them informational pamphlets and phone numbers. Even organizations like adult protection services, who are in place to help vulnerable adults, in my opinion, do not do near enough to help disabled people actually get out of violent situations. This is coming from my own personal experience and disheartening conversations that I’ve had with social workers from adult protection services during my struggle to get out.
We need more programs that prioritize people with disabilities regardless of age. And we need programs that prioritize the needs of domestic violence survivors with disabilities. When you have a disability statistically the situation is much more dire and much more likely to have a devastating outcome compared to able-bodied victims of domestic violence. As a society, we know pretty well how devastating it can already be, outcome wise, for female domestic violence victims who aren’t disabled. I would hope that it’s not hard to imagine how much the danger increases when you add a disability into the mix.
I think investments need to be made in shelters that are able to be more accommodating to the needs of disabled domestic violence survivors. There are some shelters that have staff that can help disabled survivors living there to some extent. But from my personal experience they’re not very common at all. When I was trying to find a shelter there was only one in the surrounding area that had the ability to accommodate my needs, but they were already full. All the other shelters that I had been in contact with could not accept me if I could not fully do things for myself this included getting to the grocery store, getting my own groceries, etc.
This next point ties back into the widespread education. I feel there needs to be some initiative put in place to help educate our court system of the impact that domestic violence has on disabled victims. It would be nice to have educated disability advocates working with the courts on a regular basis to help them understand things like statistics, obstacles that domestic violence victims with disabilities face that may negatively impact their ability to do things like access information, or press charges in a timely manner, or even testify against their abusers. Maybe there are places in this country where there are initiatives like this, but I know that such initiatives definitely are not nationwide.
When I was testifying in court, I would like to think that on some level my disability was taken into account, but honestly not the way it should have been. Especially not in the way that my protective order ended up being written. It was almost impossible to enforce. While under the protective order I had to file police reports, things like stalking and he brought friends of his to our original meeting spot for visitation exchanges, and they prevented me from being able to leave the store. I had to have my husband help me escape. It was very traumatic, and my police reports never went anywhere. However, I was still able to use them in court when I had to go back to address the situation. I was also told repeatedly by more than one lawyer that I should buy a gun to protect myself, because I can’t rely on the protective order to be able to do that. Which not only seems counterintuitive to me, but I can’t fire a gun, I can’t use a gun because of my disability and how it impacts me. Overall, I do believe that our court system needs to make a concerted effort to take crimes against the disabled community and the individuals within it much more seriously than they do. Especially when it comes to any kind of intimate violence. Crimes like filicide and caregiver violence, are unfortunately commonproblems that the disabled community faces, common enough that we actually have a national day of recognition for the victims of these crimes: March 1st.
I am only one person within the disabled community. I can only speak for myself and my own experiences in dealing with the obstacles of being a disabled domestic violence survivor. The experiences of the members of the disabled community are as diverse as our disabilities and limitations. Programs, services and accommodations need to be just as diverse as the people living within our community.
I believe accessibility plays a major role in not only recovery for disabled victims of domestic violence, but also prevention of domestic violence against the disabled. Victims of domestic violence, both able-bodied and disabled, are more likely to fall back into these cycles, especially if they do not have access to appropriate resources and services as well as comprehensive and applicable education on the subject. This becomes even more important when it comes to preventing domestic violence against people with disabilities and developmental disabilities.
Thank you so much for taking the time to not only hear my story, but to hear my thoughts on how I think we can better help disabled survivors of domestic violence.
ABOUT THE AUTHOR: Luna Eversong-Kloss
Luna is a tattoo, model, advocate, writer, and mother of two. She also has cerebral palsy.
Luna is standing with her crutches. She has tattoos and a lip piercing. She has long brown hair’with blonde streak. Her head is cocked, and she is smiling broadly. She is wearing a black shirt with skulls and flowers.
