Hey, Actually Support the Disabled People in Your Life
There is something about having cancer, or any disability for that matter, that will make people — from strangers to acquaintances to friends to family — act completely out of pocket. I got diagnosed with advanced stage leukemia in April 2017. I remember the outpouring of love and support from strangers online, from my partner, my best friend, and some family members. Don’t get me wrong, it 1000% got me through my initial diagnosis. It wasn’t until I got out of the hospital that things changed or maybe I started noticing shit…who knows. I realized there were a few people who I had called close friends who hadn’t so much as sent me a text, a direct message, or called even though it was a well known fact on my social media and the communities I belonged to that I just got diagnosed with cancer. The amount of pain and devastation I’ve felt from “friends” or “family” or people I share communities not checking in on me has often left me to feel overwhelmed and infuriated to say the least.
On the one hand, I get it. Cancer (or disability — I’m just speaking on my personal experience so yeah) is this big scary elephant in the room. It makes all of us question our own mortality, grapple with death, shame, regret, remorse, and a myriad of other emotions that are hella uncomfortable. Sometimes, the thought of cancer can be so overwhelming people don’t even know where to begin, what to say, how to respond, or simply how to communicate. I have empathy for it, I really do; but at the same time it’s not my job, as a disabled person, to help the able bodied people in my life unpack their own phobias around disability, cancer, death, and ableism. It’s also not an excuse to do really shitty things as a friend, lover, family member, or person.
Since having cancer, I could write a book on the lack of support I’ve received. But I’m not going to do that, instead I’ll share the few poignant moments that have stuck with me to this day and have shaped why I move the way I do now:
-On the day of my diagnosis/hospitalization, I texted my mentor of almost 4 or 5 years the news. He proceeded to ignore my message & completely left me on read. It was never addressed in the months following nor did I ever receive an apology.
-There were a couple friends who literally disappeared when I first got diagnosed then reappeared when I was released from the hospital then disappeared again when they realized my cancer was going to be a long term thing. They continued to do this weird popping in and out: when it seemed like my cancer was “okay,” they’d come back into my life and we’d pick up where we left off; But as soon as my cancer became “a problem,” they disappeared.
-There were more friends and acquaintances who I would talk to about my cancer, or my upcoming appointments (while making sure not to dump or overshare in the process) and yet there were no words of support, no check-ins post appointments — it was just like talking to a brick wall or nothing at all. They were devoid of empathy or would give really surface responses. However, what was ironic was how they would be the ones who’d emotionally dump on me (without asking for consent) about really trivial issues. These were the ones who saw our friendship as valuable when my health didn’t get in the way of my availability to help them through their problems.
-There were others who offered support and day to day help then disappeared when the time came to follow through.
- There were others close to me who would see my posts on social media and didn’t think to check in. One instance that happened recently was I had a friend of almost a year who I was really close to. I was slightly annoyed with how she handled communicating something important (wasn’t a deal breaker for our friendship) and we weren’t really speaking — I was assuming we were taking space. Shortly after, maybe a week or two later, I posted about my cancer worsening on social media. My former friend sat through and watched every single story post like it was CNN but didn’t once text me, DM me, email me, nothing to check in. Radio silence. Mind you, I’ve had people where we didn’t fuck with each other at all reach out about my cancer. And it was really in that moment something in me shifted. I blocked her, moved on, and we haven’t spoken since. I did so because in that moment I decided that people cannot have close access to my life when they can’t even check in about my life threatening illness.
My grandaddy used to say, “you’ll be lucky if you can find enough good friends to fit on one hand in this life.” And he was damn right because trauma of any kind really shows how the people in your life value you. When we talk about friendship, we have to discuss reciprocity. We have to understand reciprocity as one of the fundamental pillars to make a friendship or a relationship of any kind work. Reciprocity comes in many forms: i.e. being compassionate, considerate, being able to equally sharing space in interactions, being mutually respectful of each other’s time, boundaries, and energy, etc. How reciprocity looks varies relationship to relationship based on what each person needs but also based on how circumstances change over time.
Care is a form of reciprocity in all relationships. For me, I’m not saying every single friend or my partner have to be at my side every second, come to all my appointments, and do the job of my therapist all in one — that’d be ridiculous. What I am saying is that all my friends and people I share space with do need to be willing and self motivated to check in about me, my life, my feelings, and my cancer, what I am saying is that all my friends and people I share space with cannot expect me to give all of my compassion, listening, and emotional support when they refuse to do the same for me, what I am saying is anyone who wants to be my friend needs to be willing to maintain balance in how much is given and taken.
Care is to let people know they matter to you and that you value their life. It’s not rooted in grandiose actions or presents or whatever tf. It’s a willingness to show up. It’s a willingness to say, “I’ve been thinking of you” “I’ve honestly never dealt with this but how can I support you?” “I have a lot on my plate but I still want to be there for you, how can we make it work?” “I don’t even know where to begin and I’m sorry I don’t have the words” “Do you mind telling me more about your disability so I can understand better? Or do you have a specific website you think accurately describes it so I can be more informed?” “What can I do to make things easier?”
There is nothing worse than to be navigating life as a disabled person and to already feel isolated from people who you thought you were in a mutually caring friendship/relationship with. We already feel isolated enough whether it’s because of strangers looking at us weird or being jackasses, or a capitalist society telling us we aren’t valuable, or lack of accessibility everywhere, or bosses/professors/teachers/etc who literally have no empathy for us, I mean the list can go on. The last thing we want is to feel even more isolated from our loved ones because they are acting weird and distant and like our disability is the boogie man. It makes us feel like we are a spectacle to be ogled at, to be observed in silence, many times I’ve equated the lack of support I’ve received with my cancer to feeling like people are just waiting in suspense on social media or in my life to see if I’ve died or not yet.
We all too often forget how our inaction can deeply affect those around us. For me, I spent so much time being caught up in the trope of how disabled people constantly have to be graceful inspiration porn, always nice and grateful even in shitty circumstances or when people are being shitty that it started to dictate my behavior and my expectations. It started to dictate how I thought complete lack of support was normal. That when people ignored my cancer it was okay. I was terrified of being seen as mean for setting any boundaries, for telling friends when they weren’t being good friends, for not wanting to be a source of “charity” to stroke someone’s ego, how much I repressed my need to be seen as dynamic. I convinced myself that I should just accept a lot of bullshit. And let me say first hand, it’s a terrible fucking thing when ableist myths become your own reality.
Cancer has always been an illuminating experience and continues to be 2.5 years into my battle. Experiencing lack of support first hand has been deeply lonely at times and it has resulted in moments where I resented my disability. I’ve complained about it in many therapy sessions and have said “well maybe if I didn’t have cancer, I’d have more friends.” But what I have taken away from this and therapy and cancer and what people being basically ain’t shit is that: there is something life changing in realizing my worthiness in the midst of trauma. There is something inherently meaningful in being able to value myself when I am made to feel disposable and yet I can still set boundaries that are firm about who can and can’t have access to me.
It has been nothing short of a blessing to finally see myself (without feeling ashamed for being confident) as a really good friend, as a really good person, as a beautifully compassionate human, as someone who will go above and beyond. It has taken me my whole life to value my empathy, how I ask intentional questions, how thoughtful I am, and to know that sharing those parts of me with someone is sacred. Just as them sharing parts of themselves with me is sacred.
It has taken my whole life to create boundaries to protect my relationship with myself as I maintain relationships with others. To understand that relationships of any kind should not be depleting, should not be rooted in take take take, should not be non reciprocal, should not brush off confrontation, and should not act as if parts of me — hello, my cancer, do not exist. And I am not a bitch for realizing that, for valuing myself enough to realize I deserve better, to vocalize that, and to remove people from my life who refuse to understand or do better.
If you are able bodied and are trying to figure out how to be better at supporting the disabled people in your life or disabled people in general, understand the reality of being disabled is something you all are rarely forced to think about because you don’t have to, because it doesn’t affect your day to day life…but you need to. You need to consider what would it look like if we acknowledged the disabilities of those around us? If we practiced community care? If we supported those who need it most in our communities? If we supported our disabled peers, family members, acquaintances to the best of our ability? What would it look like to unlearn ableism & the “taboo” of disability? What is overwhelming or scary about supporting disabled people? These questions are just some of many that need to be unpacked.
Here are some ideas of how to be supportive to the disabled people in your life:
-Ask “how can I best support you” so we have autonomy — sometimes what you think is care, is actually not helpful to us at all
-If you don’t know what to say or what to do, admit that when talking to us
-If we have fundraisers: share — more than once — ask if there’s anything extra you can do to make sure our goals are met
-Realize that you likely don’t fully understand what we are going through and that is okay, but don’t pretend and don’t dismiss our feelings or fears
-If you don’t know, ask — don’t make assumptions on what we need
-Do not give unsolicited advice
-Research our disability so you can keep up with what we are saying or ask us if we feel comfortable sharing
-Do not assume how we feel because we “look good” in a photo or in person, do not assume we receiving all the support we need so you shouldn’t try to offer some
-Send a text to check in — check in when you know we have appointments (if we’ve expressed we are okay with it), check in just for fun, check in because it’s a quick way to demonstrate care
