Free snacks today, and a screamin’ deal! Plus: helping people feel included; building emotional courage; starting a neighborhood group chat; cute 2-year-olds celebrate the best thing about Costco.
love this! our resistance to expose our individual vulnerabilities and our large-scale care crisis are totally intertwined. everything above does a beautiful job of illustrating how and why.
I don't know why I'm surprised that Disney charges for the mobility scooter but I am. I guess it's because too many people might use the service if it were free, and not really need it, leaving none for the people like you who truly need it. It kind of sucks that the deterrent for that is a paywall, you know. I'm glad you got one though and I'm glad you were able to enjoy Disney in a way that worked for you!
Oh, they charge for everything! At one point a couple of teenagers walked up to me and asked where I got it and I explained the whole system and then one of the kids was like, "Are they free?" and I had to tell him no, and he was like, "It's just that my hip is really hurting" and he limped away. :(
Wow, Lisa. A fantastic post. Rich in more ways than I can count. I loved your detailed understanding that your privilege matters to your coping strategies. And, mainly, I am so glad that you're coping! As for me, I'm privileged to call you a friend.
Thank you so much for this post. As someone who’s struggled with (undiagnosed until recently) chronic health issues for a couple decades, I am also just learning how to truly pace myself and ask for the support I need from those around me. This was wonderful encouragement to keep working on it!!
I loved this! Very wise advice about children playing with the cane... I am also horrified that Disney charges for the scooters. That's appalling.
For a future newsletter, I would love advice about how to support your disabled loved ones without taking away their agency, being patronising or getting annoying. (If anyone has experience of this with people who pride themselves on pushing to burnout, I would be particularly interested).
I have a loved one who really wants to support me and my family. But he isn't honest about his capabilities and limits, and so it's hard to trust him not to get to a position where he is not okay and stuck with a toddler. Or have a genuine planning conversation. I don't mean this cruelly, but I would love advice on how to set things up for success. Often attempts to support pacing make him less likely to accept anything.
This is a great newsletter topic request, Nia. Off the top of my head, I have... not much to offer, but I'm intrigued and I'm going to do some poking around for what folks in the disability justice community have said about this. I suspect it's something like, "People have to arrive at their own understandings on their own time."
But it's different when kids are involved! If someone is caring for children when really they're not quite up to it, and that leads to the child not being safe, then that absolutely is the parents' business. It makes me think of parent friends who struggle with asking their own parents (the kids' grandparents) to care for the kids, because something the grandparents do -- or don't do -- feels unsafe to the parents.
Off the top of my head, I think your situation will just require the emotional courage (on your part) to speak very frankly with this family member, particularly about your concerns for your child's safety. You can give examples from the past. And then if your family member can't set realistic limits for himself, you may need to rethink the terms on which he spends time with your child. Ugh -- it sounds hard. If you try this, I'd love to hear how it goes.
Thank you for offering the discounted rate. I just purchased the annual membership but I am unable to add the buy one get one purchase. It still registers as $50. Any idea how I can fix this? Thanks a million.
love this! our resistance to expose our individual vulnerabilities and our large-scale care crisis are totally intertwined. everything above does a beautiful job of illustrating how and why.
Thank you for reading, Elissa! I love your work!
I don't know why I'm surprised that Disney charges for the mobility scooter but I am. I guess it's because too many people might use the service if it were free, and not really need it, leaving none for the people like you who truly need it. It kind of sucks that the deterrent for that is a paywall, you know. I'm glad you got one though and I'm glad you were able to enjoy Disney in a way that worked for you!
I had exactly the same reaction
Oh, they charge for everything! At one point a couple of teenagers walked up to me and asked where I got it and I explained the whole system and then one of the kids was like, "Are they free?" and I had to tell him no, and he was like, "It's just that my hip is really hurting" and he limped away. :(
Yup, I'm childless and have lived with MS for 20 years. I routinely use a rollator to move around and switch to mobility scooter for any distances.
Pacing is essential, as is radical honesty with myself about what I can *actually* manage on any given day.
I enjoyed this post, thank you.
Thank you for unpaywalling this! I’m disabled living with my 3yo niece and this was very helpful!
Wow, Lisa. A fantastic post. Rich in more ways than I can count. I loved your detailed understanding that your privilege matters to your coping strategies. And, mainly, I am so glad that you're coping! As for me, I'm privileged to call you a friend.
Thank you so much for reading and commenting, Walter! Big hugs. :)
Thank you so much for this post. As someone who’s struggled with (undiagnosed until recently) chronic health issues for a couple decades, I am also just learning how to truly pace myself and ask for the support I need from those around me. This was wonderful encouragement to keep working on it!!
Giving lip service to pacing versus actually doing it are two such separate things, it turns out! Thank you so much for reading. :)
What an incredible way to model self advocacy and care. Thank you for sharing this with us!
I loved this! Very wise advice about children playing with the cane... I am also horrified that Disney charges for the scooters. That's appalling.
For a future newsletter, I would love advice about how to support your disabled loved ones without taking away their agency, being patronising or getting annoying. (If anyone has experience of this with people who pride themselves on pushing to burnout, I would be particularly interested).
I have a loved one who really wants to support me and my family. But he isn't honest about his capabilities and limits, and so it's hard to trust him not to get to a position where he is not okay and stuck with a toddler. Or have a genuine planning conversation. I don't mean this cruelly, but I would love advice on how to set things up for success. Often attempts to support pacing make him less likely to accept anything.
This is a great newsletter topic request, Nia. Off the top of my head, I have... not much to offer, but I'm intrigued and I'm going to do some poking around for what folks in the disability justice community have said about this. I suspect it's something like, "People have to arrive at their own understandings on their own time."
But it's different when kids are involved! If someone is caring for children when really they're not quite up to it, and that leads to the child not being safe, then that absolutely is the parents' business. It makes me think of parent friends who struggle with asking their own parents (the kids' grandparents) to care for the kids, because something the grandparents do -- or don't do -- feels unsafe to the parents.
Off the top of my head, I think your situation will just require the emotional courage (on your part) to speak very frankly with this family member, particularly about your concerns for your child's safety. You can give examples from the past. And then if your family member can't set realistic limits for himself, you may need to rethink the terms on which he spends time with your child. Ugh -- it sounds hard. If you try this, I'd love to hear how it goes.
All of these tips are so smart. Also footnote 6 might be at the bottom but there's profound truth there.
Thank you for offering the discounted rate. I just purchased the annual membership but I am unable to add the buy one get one purchase. It still registers as $50. Any idea how I can fix this? Thanks a million.
Thank you for letting me know, Sondra! I wonder if others are having this same problem. Let me check with Anya and I'll get back to you soon!