Musings Monday: I Am Not A Burden

Content Warning: ableism, ED, chronic illness, mental illness

Image Description: Black background with stylized yellow stars. In a greyish-white thought bubble are the words “I Am Not A Burden” in yellow. Beside the thought bubble in yellow text is the following: “5 TIPS AGAINST INTERNALIZED ABLEISM”. Below that in white text is “patreon.com/lukayo” and “lukayo.com”.

When I first started to come to terms with how disabled I’d gotten, I was furious and then despairing. I had always been somewhat sickly– an asthmatic child that tired easily, and due to my large frame, spent years with an eating disorder that was undiagnosed despite the radical shifts in weight. The reality that I would have more to manage mentally, emotionally, and physically in unpredictable and drastic ways was daunting and left me with fatalistic ideation that I would soon come to recognize as “internalized ableism”. Over the years, I’ve reached out to other disabled folks asking them what they’ve done to stop their own attitudes and thoughts that just made things worse, and this is what I’ve learned.

1) Educating yourself.

I read everything I could by Eddie Ndopu, Patty Berne, Sins Invalid, Mia Mingus, Leah Lakshmi-Piepzna Samarasinha, AJ Withers, and Eli Clare. I also read the following articles on internalized ableism:

Understanding that there’s a system at work, and it isn’t just about me, began the process of unlearning self-hatred, but it was usually an intellectual change, and my emotional gut reactions were still there.

2) Reminding yourself.

Since my emotions tended to erase a lot of theory that I’d read, I tended to put up reminders, either through a side tumblr filled with disability activist quotes, and print-outs I’d put up on my wall so I could see it when I woke up. I’d even try to post these reminder lists on my desktop. These are the ones I particularly like:

If you want to make your on side tumblr and you’ve never done anything like that before, just pick a cute name (I chose the Bikol word for recovery), and then in the search bar type in search words, whether it’s “chronic illness”, or “disability justice”, or “disability rights”. You can even type in your diagnosis for specific kinds of affirmations and quotes on it. You may come across other tumblrs that also only re-blog quotes, theory, and affirmations, as well as hilarious and soothing memes. You can follow them and begin the process of accessing these kinds of reminders. You can also set it up so that when your browser opens, it immediately opens up to your side tumblr page.

3) Reaching out.

Here we get to some scary stuff, in my personal opinion. I found it easy looking for resources to read and use to remind myself. But actually reaching out to real, live people? Yikes. I did it anyway. I needed help. I went to free disability-focused conferences, like the Reclaiming Our Bodies & Minds Conference at Ryerson University. If I went to festivals and conferences that weren’t only about disability, I prioritized attending any workshops and sessions that were on disability– whether the events were about sexuality, gender, spirituality, or general activism. I prioritized spending time with my disabled friends and temporarily able-bodied folks who had high access intimacy with me. I made request posts looking to start a personal care collective.

4) Sharing your story.

This article is basically an illustration of tip #4. So were all the Facebook posts that honestly talked about my needs and barriers. So were all the filtered Facebook posts and secret side tumblr posts where I just broke down and word-vomited all my pain and frustration at what seems like an ever-increasing mountain of disability and ableism. I also shared with people over the phone, on private messenger, over text, in person in private rooms, classrooms, and public workshops. I shared, consensually, with family members, friends, strangers, and professional care workers. I wrote stories and poetry; I made art and music. I prayed and shared with Creator, my ancestors, gods, and spirits. I laid out all the internalized terrible nonsense inside of me, dragging it out so that the poison could be seen instead of left festering in my heart and soul.

5) Accepting support.

Of course, once I reached out and I shared, then came the offers of support. I thought I had done all the hard work already, but I was horrified when folks offered support, and horrified that I felt horror in the first place. Some of my concerns was legitimate– I was used to the folks who were already providing me care and I trusted them. I would have to go out on a limb and attempt to rely on people that I did not know very well and thus had not earned much of my trust. Sometimes I would not have the energy to face a new person in my personal space providing me care, and I would just go without the things that I needed, worrying as to whether I had let my internalized ableism win or whether I was rightfully cautious yet paying a price that was beyond my control. Either option was shitty. But when I did have the energy to take that risk, the joy and relief at having a new care collective member and/or friend that embodied the kind of world where interdependence and community care is the norm was overwhelming that I found myself weeping and/or laughing once they had left. I found myself overcome with hope and, after every time, the barrage of internalized ableist thoughts would quiet further and further. It’s a start.

I hope these tips help you, especially if you’re beginning your journey of strategizing against your internalized ableism as a disabled person, just like me several years ago. Feel free to comment on this article or message me about it!

Like what you read? Want to support my community and the Indigenous elders that mentor me? Please become a patron: https://www.patreon.com/posts/21944958