Many disabled people live with guilt and fear that they are not doing enough. I’m working on this. Every session, my therapist reminds me to stop being so hard on myself. She makes an effort to recognize my actions and tell me that I am doing a lot. Managing my chronic illnesses takes a lot of effort and sometimes I don’t have space for many hobbies, friends and activities that I used to love. I am coming to terms with that.
In this moment, white disabled people like me have to recognize our privilege and use it. We have to listen to Black activists, boost their work, decenter ourselves and make time for anti-racism work. While my status as a disabled woman helps me empathize and practice compassion, I am working on ways to be a better ally and decenter myself.
One of the ways in which I can be an ally is to challenge the lies I tell myself, starting with the lie that I’m not doing enough.
My biggest challenge with ME/CFS is that I have the desire and motivation to do so much more than my body allows. I am finally learning to listen to my body. I am finally learning how to stop. In the past, I have continuously pushed myself to do more and more, without recognize the physical, emotional, and mental stress that causes.
For disabled and chronically ill people, we need to be incredibly mindful of when to stop. It’s easy to think that our activism is restricted by our illness and disability, but it’s not restricted – our activism just needs adaptations.
I am so encouraged to see so many Black activists sharing accessible ways to participate in the Black Lives Matter movement. I encourage you to seek out these resources as well.
Here are just a few resources:
- Black Lives Matter
- The Movement For Black Lives
- Imani Barbarin is the leading voice for #BlackDisabledLivesMatter. I encourage you to follow Imani on twitter and Instagram.
- This Twitter thread from @gendervamp describing ways to participate from home.
- This list of resources from Rachel Cargle, including a reading list, template to send to your employer for accountability, lecture on unpacking white feminism, a free #DoTheWork course, 75 action items article, racial justice research document, and more.
- This list of resources from Rachel Ricketts including information on collective grief breathwork and spiritual activism.
- The Ally Box from Fulton Street Books & Coffee, a Black-owned business. Subscription includes two books, curated resources, and suggested action steps.
- Watch this video from YouTube creator Zoe Amira – make sure to watch the ads as 100% of the ad revenue is being donated to the cause! Zoe also includes an extensive list of petitions to sign.
- The DOs and DON’Ts of how to ally from @wastefreemarie on instagram
I am so encouraged and excited to see so many ways that I can participate in this movement while protecting my health and wellness.
I am working on recognizing the work I am doing – not because I want or deserve praise, but so that I can stop being so hard on myself. For so long, I never talked about myself, never shared what I was going through, and I just ruminated on my thoughts, emotions, and pain by myself. This blog is my way to stop doing that and to be open and make space for hard conversations. Here are some things I am doing right now to help support myself as I practice anti-racism:
- I reached out to close friends and family to let them know that I care about them, but won’t be able to express it in the ways I have in the past – by reaching out to them and responding to messages. I am making space to focus on my health, wellness, and spirituality, my disability and ME activism, and anti-racism. This means recognizing that I won’t have space for other things, but that doesn’t mean I don’t care about my friendships and family. I let them know that I am here for them to reach out and talk about those things, but that my energy window is very limited and that I am not in a position to be providing them support in other areas right now. I am glad that so many of them were receptive to this.
- I am mindfully consuming media. I am unfollowing people that aren’t trying to make these necessary changes in their lives. I am muting some people so that I can focus on online activism. I turned off social media notifications so that I am less likely to become distracted and pulled in by a notification. I engage in social media during a set time period when I am ready and able to participate. I am also being more mindful about what I share and why I’m sharing it. I’m trying to remove ego from it. This isn’t about me; this is about all of humanity.
- I am recognizing that I am doing enough and I can participate in this movement in ways that are accessible to me and won’t cause me harm. This is especially important for other people with chronic illness, disability, and trauma. My volunteer work with MEAction has been so helpful in this area. I listen to others when they ask me to check in with my body and see how I’m doing and I listen when they encourage me not to overextend myself. Which brings me to my last point.
- I am trusting myself and practicing self-compassion, which is much easier said than done.
I recently read the book Start Where You Are by Pema Chodron and was struck by how applicable these meditation practices are to the current moment. Chodron writes: “If we are willing to stand fully in our own shoes and never give up on ourselves, then we will be able to put ourselves in the shoes of others and never give up on them. True compassion does not come from wanting to help out those less fortunate than ourselves but from realizing our kinship with all beings.”
She focuses on the fact that compassion for ourselves leads naturally to unconditional compassion for others. It’s also vital to recognize that while my experience with ableism and misogyny can help me practice compassion and empathy, drawing comparisons in this way puts myself at the center of the issue and this movement is centered on Black Lives.
Starting with the principle that I cannot compare racism to struggles I experience, I can use this framework to learn about white saviorism. As @wastefreemarie says in her How to Ally post, “You’re not rescuing us from our own situation. You are simply making an effort to lessen the hurt that you have caused.” Making the effort to lessen the hurt that I have caused IS doing enough and it is hard work.
I can use my empathy and compassion by drawing parallels with my experience advocating for disability justice, while understanding that these issues are not the same. I recognize that I’m still learning here and I encourage messages to let me know if I have mis-stepped. I am now in a position to better understand the concept of white saviorism because of my newly-developed disability. I thought I was doing good work advocating for ADA changes in the past, before I was disabled, but now I recognize that I wasn’t truly listening to the people affected, just as I have done with race issues. When I try to recruit healthy allies in my ME activism, it’s not under the expectation that they will rescue us – we are leading the fight but we need all the support we can get. With that perspective, I am better able to understand that I am not a savior, but Black activists deserve my support. I am learning not to be defensive and to listen earnestly. I am learning to give Black people the benefit of the doubt, just as I do with people who are disabled and sick when they ask me to believe their stories. This is hard work and it is important that we recognize that by doing this work for ourselves, we are doing enough.
I am making an effort to talk to other white people about anti-racism. I am creating space for other white people to talk to me about these issues, rather than expecting Black friends to educate us or talking to Black friends about our white guilt. I am guilty of relying heavily on my Black friends for education and emotional support. I am working on decentering myself and instead, honoring and centering the feelings of Black people.
But don’t listen to me – practice this for yourself and learn from Black activists. That’s one of my favorite tenets of Buddhism – that people are encouraged to explore and learn from your experiences and the experiences that others share with you, rather than blindly following. This practice of openness – an open mind and an open heart – is so important.
Practicing mindfulness is so beneficial to me in this moment. One of the tenets of mindfulness is to recognize thoughts without labeling them as “bad” or “good.” A thought it just a thought. A feeling is just a feeling. They are neither good nor bad. But, this framework needs to be put into perspective when it comes to racist vs anti-racist thoughts and beliefs. Racist thoughts are bad, but that does not mean YOU are bad. If I recognize a racist idea or thought, rather than repressing it or ignoring it, I recognize that although this thought is racist, I am working to be anti-racist. This is especially important for white feminists and disability advocates as we unpack our privilege.
Chodron also says, “If you know it in yourself, you can know it in everyone.” This gives me hope. I know that the pain and grief I feel isn’t unique to me – I recognize it in everyone. I know that the progress I see in myself over my lifetime when it comes to anti-racism isn’t unique to me – I can recognize it in everyone. I do have family and friends that I deemed hopeless in this fight and almost all of them are making progress towards anti-racism. This gives me hope.
By recognizing my progress, I can also make space for white people who may be new to this movement without being condescending or angry that they weren’t here until now. I am from Baltimore and I coped by numbing and withdrawing when I didn’t feel safe showing compassion for Freddie Gray when he was murdered by Baltimore Police. I didn’t feel safe, supported, or heard, when I defended players on the Ravens when they knelt in protest of police brutality before a game. I regret that I didn’t feel safe to take a strong stance then, but I recognize that I was doing what I could and I can practice compassion for those that are now joining the movement. I regret that I focused on my own grief and trauma surrounding these issues, rather than centering Black feelings. I was in a position to do more, working for a team and collecting stories from fans, but most of the people buying tickets are older white men and we wrongly centered our response on their feelings. I still strongly feel that I did not do enough then, but I am practicing self-compassion and working to forgive my past self. I messed up, but I was learning.
It also helps me to understand that these reactions are normal and part of being human. The numbness, the anger the grief, the sadness, the guilt, the anxiety, the blame, the feelings of not doing enough – these are all part of the human experience. I can use these feelings to connect with my sense of self and with the idea that we are all interconnected.
I’ll share one more quote from Chodron’s book that resonated with me: “I understood why I practice: we can discover the process of letting go and relaxing during our lifetime. In fact, that’s the way to live: stop struggling against the fact that things are slipping through our fingers. Stop struggling against the fact that nothing’s solid to begin with and things don’t last. Knowing that can give us a lot of space and a lot of room if we can relax with it instead of screaming and struggling against it.”
Yes, this feels like we are in a constant struggle and it sometimes feels like we’re screaming into a void and only being echoed by like-minded people, without being understood by others. But we need to recognize that things are constantly changing – within our physical bodies and within our mind. Just as I am changing, many others are too. Collectively, we are making progress. Yes, it feels like I’m not doing enough, but collectively we are doing so much and it’s important that we each recognize how much of an impact each action has, whether it’s taking time to read and learn, having a conversation about race and privilege with a friend, donating money, signing a petition, sharing content from Black activists on social media, participating in a protest – there are so many ways that we can take action and each action is important.