I do appreciate this. I often find it so challenging that the “safe” and “supportive” spaces for disabled folks can suddenly become toxic and harming as other folks gatekeep around whose experience is most valid or severe. I’ve found online support groups so valuable for resources they provide but more recently have been alarmed at how full of attack they can be. Especially because all of us have energy limiting illnesses, using energy to blame or shame others seems so bizarre to me. Of course as someone mostly bed-bound it can be hard to read about someone who feels sad about getting PEM from a challenging work day, travel for pleasure, or exercise outside. But, just because we don’t share the same experience of ME doesn’t mean that their experience isn’t extremely hard or is in some way invalid. I definitely don’t think we need to compete to be the sickest or the most disabled. Each of us is deeply and profoundly effected, our lives changed, shaped, challenged by our bodies.
Thank you for sharing your thoughts on this! I think a big turning point in my thinking was when I was receiving messages from people who were like "I know the reason I feel sad about my health getting worse and needing a mobility aid is because of internalised ableism" (and people were telling them that) and I was like...it's TOTALLY normal to be sad about that. About losing mobility!
As you said, there's so much attack, an unwillingness to look outside of our own experiences, and I think things like "X things you should NEVER say/do etc" can feed into this. It creates an expectation that these are the ways you should think or behave in a certain situation. And because groups can be such a wonderful place for support, when the toxic elements come in, it can create a sense of uniformity, of expectation.
I know people who have made improvements that have been scared to talk about it because they're scared of being attacked online. So we don't alway see the full picture (a "full-picture online is never a full-life picture, obv) and it limits us in the conversations you're able to have.
As you said, I know people who are able to work full-time, but really struggle with everything in their life apart from that. If we can't talk about the variety of experiences, we're not helping anyone. And I think, as I mentioned, recognising that something can have value beyond our own, is a really helpful skill to learn when consuming content online. But gosh, it is definitely difficult, and when you want to write or share responsibly, that's also difficult. I saw someone in a video yesterday talking about diet stuff and she said, if I do share stuff online, I want it to be responsible, but the reality is that in my day-to-day life, I don't necessarily act in the perfect online responsible way. So how do I talk about that?
Recently I witnessed a group sort of gang up on someone who posted something positive. And I’ve also been questioned- though it felt like interrogation- about how “sick” I really was. It is so challenging because we need spaces to be vulnerable, vent, with people who understand in some way our experiences. We need spaces to not be responsible / censoring ourselves or overthinking necessarily but just in the complexity of what it is to try to manage to be and rest in a world made and driven by productivity and output and where ticking boxes of accomplishment is a measure of value. But, how to create that space when we are all having such unique experiences of embodiment and managing (as best we can) to survive in the midst of challenge?
I appreciate that this group in particular has brought me into contact with people who don’t necessarily have my same illnesses and disabilities but can relate through their own energy-limiting experiences. It’s opened me to different language, ways to connect about physical and emotional challenges, and helped me reconsider my own approaches. I think multiple perspectives within these spaces is so important to learning and finding true community. Thank you 🤍
I do appreciate this. I often find it so challenging that the “safe” and “supportive” spaces for disabled folks can suddenly become toxic and harming as other folks gatekeep around whose experience is most valid or severe. I’ve found online support groups so valuable for resources they provide but more recently have been alarmed at how full of attack they can be. Especially because all of us have energy limiting illnesses, using energy to blame or shame others seems so bizarre to me. Of course as someone mostly bed-bound it can be hard to read about someone who feels sad about getting PEM from a challenging work day, travel for pleasure, or exercise outside. But, just because we don’t share the same experience of ME doesn’t mean that their experience isn’t extremely hard or is in some way invalid. I definitely don’t think we need to compete to be the sickest or the most disabled. Each of us is deeply and profoundly effected, our lives changed, shaped, challenged by our bodies.
I so appreciate your comments, Natasha!
Thank you for sharing your thoughts on this! I think a big turning point in my thinking was when I was receiving messages from people who were like "I know the reason I feel sad about my health getting worse and needing a mobility aid is because of internalised ableism" (and people were telling them that) and I was like...it's TOTALLY normal to be sad about that. About losing mobility!
As you said, there's so much attack, an unwillingness to look outside of our own experiences, and I think things like "X things you should NEVER say/do etc" can feed into this. It creates an expectation that these are the ways you should think or behave in a certain situation. And because groups can be such a wonderful place for support, when the toxic elements come in, it can create a sense of uniformity, of expectation.
I know people who have made improvements that have been scared to talk about it because they're scared of being attacked online. So we don't alway see the full picture (a "full-picture online is never a full-life picture, obv) and it limits us in the conversations you're able to have.
As you said, I know people who are able to work full-time, but really struggle with everything in their life apart from that. If we can't talk about the variety of experiences, we're not helping anyone. And I think, as I mentioned, recognising that something can have value beyond our own, is a really helpful skill to learn when consuming content online. But gosh, it is definitely difficult, and when you want to write or share responsibly, that's also difficult. I saw someone in a video yesterday talking about diet stuff and she said, if I do share stuff online, I want it to be responsible, but the reality is that in my day-to-day life, I don't necessarily act in the perfect online responsible way. So how do I talk about that?
Things are messy and complicated!
Yes! Yes! Yes!
Recently I witnessed a group sort of gang up on someone who posted something positive. And I’ve also been questioned- though it felt like interrogation- about how “sick” I really was. It is so challenging because we need spaces to be vulnerable, vent, with people who understand in some way our experiences. We need spaces to not be responsible / censoring ourselves or overthinking necessarily but just in the complexity of what it is to try to manage to be and rest in a world made and driven by productivity and output and where ticking boxes of accomplishment is a measure of value. But, how to create that space when we are all having such unique experiences of embodiment and managing (as best we can) to survive in the midst of challenge?
I appreciate that this group in particular has brought me into contact with people who don’t necessarily have my same illnesses and disabilities but can relate through their own energy-limiting experiences. It’s opened me to different language, ways to connect about physical and emotional challenges, and helped me reconsider my own approaches. I think multiple perspectives within these spaces is so important to learning and finding true community. Thank you 🤍