The Challenges and Privileges of My Disability Experience

Written by Amy Denton-Luke

As I begin to feel more comfortable in my disabled body, I am starting to share my experiences with the world.  I’m proud of myself for taking this big step, but I also worry about two very real possibilities: that people will make assumptions about my disability based on misinformed notions of what disability means, or that they will see my experience with disability and believe it is representative of all experiences with disabilities.  Disability is not a black and white, all or nothing, one size fits all experience. There are as many unique experiences of disability as there are individuals living with them.  In this article, I will offer insight into the particular challenges I face and the privileges I hold in an effort to demonstrate a few of those differences, as well as some common misconceptions about what it means to be disabled. 

Disability is Not All or Nothing

Walking is not my strong suit. I struggle with the forward movement as I don’t have a lot of control over my right leg.  My brain lacks communication with the nerves, muscles, and bones required to lift, bend, step. I have to lean far to the left to swing my right leg forward, which puts a lot of pressure on my left leg to compensate for the right. The need to keep doing this already-strained motion over and over results in my ability growing weaker the farther I go.  Thankfully, I have forearm crutches that provide the support I need to walk farther, faster, and with less pain. 

My mobility issues are the result of neurological issues as well as structural, including SI joint dysfunction.  My abilities vary day to day, depending on my symptoms, what I have done the previous days, and the activity involved.  On a good day, I have a little more control and a little more endurance.  On a bad day, my right foot drags a bit and my limp is more pronounced.  I can usually walk a short distance unassisted but for more extensive activities such as visiting the zoo with my family, I need to use a wheelchair.

This need for different mobility aids on different days and for different activities, called dynamic disabilities, is actually quite common.  However, people assume that mobility aid use is ‘always’ or ‘never’, which can lead to the harmful assumption that somebody is “faking” their disability if they stand up from their wheelchair, walk without their cane, etc.  It’s important to know that people use mobility aids for different reasons, including pain, fatigue, heart conditions, dizziness and balance, and more. 

Mobility aids are not all or nothing, and neither are disabilities.  While I struggle with walking and forward movement, I am fairly strong, balanced, and stable.  My body is capable when it comes to yoga and climbing around the hills of South Dakota’s grasslands.  We all have strengths and weaknesses.  If I’m not using my forearm crutches, it’s not because I’m “faking” a disability.  It’s because the activity that I’m doing at that moment is either not affected by my disability, or would not be helped by the support of the forearm crutches. 

The Myth of Overcoming Disability

I have recently started sharing pictures of me adventuring with my forearm crutches in an effort to help normalize Disabled folks in outdoor spaces.  Bringing attention to the fact that Disabled people want to explore the outdoors just as non-disabled folks do is an important step in getting access for all people with varying abilities.  However, I’m becoming aware of how those pictures might be used by some as “inspiration porn” to spread a common but misinformed message about Disabled people “overcoming” their disabilities.  This idea is rooted in the ableist notion that Disabled people are miserable, pitiful, and incapable of doing anything, so seeing a Disabled person recreating outdoors and smiling must mean they’re “overcoming” their “circumstances”, right?  

When I am out hiking and exploring in the mountains, I am in no way “overcoming” my disabilities.  I am very much living with them.  It takes me about an hour to walk a mile, my limit is generally two miles in one day, and I take a lot of breaks.  The forearm crutches make adventuring possible for me, but there’s no magical shedding of my limitations and struggles when I step into those mountains. My exploration of the outdoors doesn’t make me “special” or somehow different from other people with disabilities, it just means that my particular disability does not or has not yet prevented me from doing this particular activity on this particular day in this particular location.

My ability to access the outdoors does not mean it’s accessible for everyone.  Each disability is different, and different people with different disabilities will have different access needs.  Accessibility requirements can mean a flat and wide trail, benches, bathrooms, braille on signs, van-accessible parking, or even information offered on websites to find the accessible areas in the first place.  Just because I can explore the outdoors in certain contexts doesn’t mean every other Disabled person can do the same. 

External and Internalized Ableism

When I first began using mobility aids, there seemed to be a lot of confusion and judgement by some people who knew me.  The biggest question was “why”.  “Why” is she in a wheelchair?  “Why” is she using forearm crutches? “What happened” to Amy?  The people asking those questions had been informed of my diagnosis and given explanations as to what that illness entailed.  Whether or not they chose to listen and believe me was obvious in their apparent bewilderment by my use of mobility aids.  It should not have been so surprising.  After all, the majority of people who use mobility aids do so because of illness rather than injury. 

Adjusting to my disabilities would have been easier if not for the reactions of others to my mobility aids. Strangers make those all-or-nothing assumptions when they see the forearm crutches, believing I must also be nonverbal and have an intellectual disability, or that I’m somehow “faking” my disability for attention.  I experience this a lot when I’m hiking with my forearm crutches, where people don’t quite know what to think of me.  I've had people mistake the crutches for trekking poles, some are so busy staring at my legs in confusion that they forget to say hello back to me, and occasionally people will casually strike up a conversation just so they can ask why I'm using crutches.

Most of us have grown up in an ableist society, and becoming disabled doesn’t immediately erase decades of that social conditioning.  I too have internalized ableism.  I am actively working against those impulsive, split second thoughts that tell me a person must be at fault for their disability, or faking, or not doing enough to ‘get better’, or must have X disability in addition to the Y disability.  These thoughts are not just directed at others, they are directed internally too: “Don’t be dramatic. You don’t need those crutches. Stop faking. You’re just doing this for attention. You’re not really disabled” while pendulating between wondering if I’m disabled “enough” and worrying that I look “too disabled”.

The ableist views we are raised with make becoming disabled incredibly difficult.  We are taught that Disabled people are to be pitied.  We are told our life is over and not worth living if we are not perfectly abled-bodied.  We learn from our capitalist culture that our worth is based on our productivity and what we can do for others. This social conditioning, and not the disability itself, is what made me feel like a worthless burden, extremely self conscious about my legs, and in denial that I was, in fact, disabled. Adjusting to your body’s new limits and abilities is certainly difficult, but for me, it wasn’t the worst part.  It’s the ableist view of disability in our culture that creates the most obstacles to accepting and embracing your disability.    

Complex Feelings About Complex Issues

My feelings about my disabilities change from day to day.  I have days where I feel really sad about my legs. I wish I could go dancing or rollerblading or learn how to skateboard. Pictures of able-bodied people on thru-hikes deep in the mountains come with a gut-punch, and I grieve the loss of my once-abled body and the experiences that I may never have again.  Then there are days where I celebrate my body.  I’m amazed at its strength and beauty and I feel this profound joy to be living in harmony with what my body needs. I have days that I appreciate the lessons that could not have been learned without the disabilities. And then there are days where my disabilities are just a part of my life like anything else, and I go about my day without thinking about them much.

There are many factors that influence how I feel about my disabilities. I wasn’t born with a disability, so I have had to adjust to this new life. My mobility issues do not exist in a vacuum; they are entwined with complicated health issues. There is a chance my legs could get better, so the permanence is not a certainty.  Injury versus illness, lifelong to later in life, temporary versus permanent: all of these nuances inform my thoughts and feelings, and it’s important to know that others with disabilities will feel differently toward their disabilities at different times for different reasons.  How someone feels about their disability will be different between the person who had an unexpected limb amputation two months ago, the person who has had cerebral palsy from birth, and the person who developed a treatable neurological disorder later in life. 

If I’m having a good day, it doesn’t mean I never have bad days, and if I’m having a bad day, there’s no need to push me into being “positive” about my disabilities.  If I feel a certain way about my disabilities, it does not mean all Disabled people do or should feel that way, and it also doesn’t mean that is my only or permanent feeling toward my disabilities. We all have good days and bad days, times of grief and times of celebration, and complex feelings about complex issues.  It is always changing, rarely linear, and it is all valid. 

The Worst Part is Not the Mobility Issues.  It’s the Pain.

To be honest, the mobility issues don’t bother me that much. While it can certainly be frustrating to have a leg that you can’t quite control, it doesn’t usually interfere with my daily life, and the forearm crutches make the mobility issues much less of a barrier when I go out into the world.  I don’t need perfectly functioning legs to have a good life. If I could change exactly one thing, it would not be the ability to walk unassisted and uninhibited, it would be the ability to walk—and live-- without pain. 

My life is far more limited from the pain than I will ever be by the mobility issues.  I will never get used to living with unbearable pain every minute of every day.  It is devastating.  It never stops, there is no relief, and the more I do, the worse the pain gets. It's the chronic leg pain that keeps me angry, frustrated, and grieving.  It’s the pain that affects what activities I do, how long I enjoy them, how often I do them, and how far I can go.  It’s the pain that requires me to rest for days before doing any activity, and long days of recovery afterward. It’s the pain that has the most drastic impact on my quality of life, my ability to sleep and rest, my ability to do household chores like cooking and cleaning, my ability to be on my feet, my ability to function.  It affects my ability to enjoy my life at all. And when that pain flares, I am forced into survival mode for days or even weeks at a time; consumed by the pain, tending to the pain, unable to think about anything but the pain, or so overwhelmed by it that I completely dissociate from my body and the world.  These flares occur often and are a near guarantee after doing any kind of activity.  The cost for daring to enjoy my life is high.    

Chronic pain and mobility issues are not the only disabilities I have.  I also have brain fog that affects my memory and my ability to think clearly, process information, focus, and communicate.  My mobility issues are the primary disability that I talk about, both in this article and elsewhere, because I think that’s the easiest one for people to understand, the easiest for me to talk about, and, of course, the only one others can see.  The truth is that the vast majority of disabilities are invisible, and I want people to know that without the crutches and without the mobility issues, I would still be disabled.  Though my other disabilities are less obvious, they are far more dis-abling. 

I Benefit Tremendously From Privilege

This is arguably the most important point that I could make as I began to dip my toes into disability activism. My disability experience will differ from others because I have been able to buy my way out of the issues that many people with disabilities face. My husband is able to financially support me, which means I neither have to fight the government for assistance, nor do I have to live in forced poverty in order to qualify and continue receiving those benefits. I was able to marry my husband, which is not an option available to everyone, as they could lose their Medicaid insurance.  I have not been forced to fight through my symptoms in order to work and make money.  I have been able to focus on taking care of my body, and able to afford many of the treatments my doctor recommended. 

I can get around my house without the mobility aids and I do not need a caregiver for assistance with showering, meals, etc.  If I’m not using my crutches, I can pass as non-disabled, so I may be treated differently than those who cannot hide their disabilities. I could also argue that having a visible disability is a privilege because I don’t have the added struggle of having to “prove” my disability to strangers, so I’m less likely to be harassed for parking in a disabled parking space, for example.  I have also been able to buy my access to the outdoors through a side-by-side ATV and a pick up camper, which allows me to enjoy the outdoors without having to rely solely on my body and the few accessible public outdoor spaces nearby. 

I do not represent many peoples’ disability experience.  I cannot speak to the experience of Disabled People who do not benefit from the same socioeconomic privilege that I do. Additionally, as a white cis-het woman, I do not experience discrimination based on my skin color, sexual orientation, or gender identity, and this affords me a considerable amount of privilege as well.  In healthcare, a doctor is more likely to take my pain seriously than a Black Disabled woman’s pain, which will affect the care we receive.  As a cis Disabled woman, my access to healthcare is not being threatened as it is for trans Disabled women.  My husband can hold my hand during doctor appointments without fear that we will be treated poorly or harassed for our sexual orientation.  This privilege extends far beyond healthcare too.  For example, as a white and neurotypical Disabled woman, my interactions with the police will end far better than those of a Black Disabled man, who are most often the victims of police violence.  This is why it is so important to listen to the experiences of Disabled people who are multiply-marginalized, who will have different stories to tell, and many more mountains to climb. 

Using My Challenges and Privileges for Good

There are many factors that go into a person’s experience with disability, and I hope that I have demonstrated a few of them here.  We have various strengths and weaknesses, limitations and support needs, face external and internalized ableism, have complex feelings about complex issues, deal with invisible and visible disabilities, as well as privileges and marginalization.  There is no one size fits all disability experience, and it’s important to listen to the perspectives of a variety of Disabled people with a variety of backgrounds, especially those whose disabilities have been deemed less ‘palatable’ for the non-disabled public, as well as those who face compounding oppression due to their multiple marginalized identities. 

My hope is to take all of my unique challenges and privileges and use my voice for good.  It took me a long time to acknowledge that I was disabled, and even longer to speak up about it.  I’m just beginning this journey of raising awareness and I’m still figuring out how to do so.  I know that I can’t speak for everyone, but I am learning that each of us has a voice that can play a role in drawing attention to disability issues and fighting for the access, accommodations, and equality that all Disabled folks need and deserve.