Wow, Tilly! That’s sobering. You’re incredibly articulate in explaining such complex emotions and touching gently but firmly the delicate fine lines between stigma, reality, sensitivity, hidden agendas and explicit prejudice and nastiness. All the intersections of difference which make our existence so colourfully human are also the perfect terrain for the seeds of discrimination and hatred, creating the illusion that some of us are better, more superior, more “equal” than others. How incredibly beautiful, kind and generous humans can be, it is as much truth as how abhorrent, hateful and inhumane humans can also be.
When my brother was small (and so was I), it was common for people to ask me if I wished he wasn’t disabled and even if I wished he hadn’t been born. I heard so many absurd things growing up. My mum once told me that all I could do was try to teach people about him, so they would not say those things. I took in on the mission and never stopped. But I kind of ‘forgive’ the people who did that to me and my brother in a developing country in the seventies. Fifty years later, in the so-called developed world, post-global pandemic, in the early rise of AI, I cannot comprehend ableism at all. Or any isms, if I’m honest.
Thank you so much Hilra, and so sorry for the treatment you and your brother received. These questions are sadly all too common, and although I always do my best to kindly educate, sometimes the burden of that is great. Thank you for also being here in the fight against it all, and for your ongoing support x
Oh that also reminded me that I never told you the story I once lost after typing in a comment to you!! It was when you wrote about some barriers to your wheelchair on a way to somewhere. I’ll tell you now.
Once, I asked a young person to write me a list of the accessibility barriers they had encountered in this building where I worked. This was because this person was leaving soon and I realised we had never finished a conversation on that topic and I didn’t want to miss their insight. The main reason for that was because this young person was one rare case of disabled person who was also a high profile therefore had a voice. Which wasn’t always the case for the wheelchair users before them.
They wrote me a list. Not only the list was far longer than I anticipated, but the simplicity of the solutions was mindblowing. They had asked the correct department to address these and after nearly two years, they were leaving the building without seeing those issues addressed.
I was also deeply disappointed in myself for missing so many of the issues they pointed out! Now they seemed so obvious. Like a speed bump in the car park that is simply impossible to go over in a manual chair, unless someone lifts/pushes you! A door that has a button but you can only access it if you get out of your chair (or someone presses it for you). Same door, on the way out, needs to be held open by an almighty strong arm, while you wheel yourself out. I had never given that door a second thought as I very rarely left the building that way. But that was the only exit wheelchair “accessible”, if you were in a certain part of the building.
Anyway, I gave that list to the appropriate department and explained it has come from said person who was happy to be named, knowing their name meant something.
The person receiving the list thanked me and said they’d bring it to the next whatever name of boarding meeting for discussion. A year later, the bump was still there and I was on my way out of the organisation, so went there to remind them of my now old list. I was told it would be included in the next such and such, whatever they said, but this time the person added “but we are not likely to do anything that involves any costs any time soon”.
And that was the story of that list. I am convinced that if I go to that building today, I will find the bump and the door and most likely every item of that long list.
I should have put a disclaimer that there wasn’t a happy ending.
I hope this doesn’t feel burdensome but - I think you should use this as the seed for a book. I know - “who will read it”, “why bother?” Sadly it is necessary medicine. Our collective failure to develop our humanity must be seen. Your writing is clear, strong, unabashed. Those are such important qualities.
I’d also like to offer that I was born one of the hopeful as well. I remember being very young and heartbroken when I realized that I could never possibly get to meet and become friends with the tens of thousands of people who lived in my city. I still love people. But living in America it’s clear we’ve lost sight of our own humanity, if we ever really had it.
Again, back to burdening you - if you don’t shine a light on our darkness, who will?
Oh Tilly, I am so moved by your words and that you shared them with me and with us. My beloved husband lives with a profound chronic illness and we have experienced so much hurtful neglect out in the world that it has broken my heart and his. Please know that you are not alone. Thank you for your candor. I want and need to know how ableism and discrimination affect you and others who live with disabilities so that I can do better at reaching out with support and kindness. You are very brave. And your creative life with color, and clothes, and spreading it all about is brilliant! Sending so much love to you!💕🙏🏼🌞
Oh, my heart – this resonated with me so profoundly. I too have always been an optimist and believed in the inherent kindness of people. The past few years have been utterly brutal and to hear that framed as grief is extremely validating. It’s exhausting to constantly have to advocate for yourself as a disabled person. Even the occasional wins come at such a cost to our humanity, as we are often required to expose our deepest vulnerabilities in order to preserve our dignity – an oxymoron if ever there was one. I am so grateful that you chose to post this. It has helped put a voice to so many of my own feelings, and helped me feel much less alone today.
Thank you for sharing your vulnerability as you contemplated whether or not to post this. You modelled compassion for others in your warning and disclaimer. What you have written will allow others to take a breath and feel understood. You are a "soul gift". I am grateful to have you in my Substack community.
I've restacked - because your words matter, your point of view matters, your experiences matter, you matter.
I hope sharing this will be a good experience. We can't make up for how you were wronged, but we maybe can add some positive long distance humanity to the scales.
Tilly, thank you. i have added to my quotes list of 2025 your words, “If grief is love run backwards, then I loved humanity so much….” This is a beautiful reminder of what grief truly is: the absence of something longed for. I’m sitting beside you in your grief - trying to share it as best I can.
That’s horrible that you’ve been treated that way. I can no longer walk without help. We’re going to look into a walker. I keep thinking/hoping I can gain control. I grieve for the person I once was. I have scoliosis and my body, which I now HATE, is turned to the right. My neck is damaged. I walk with it down. I also have dementia. My neurologist made a follow- up appointment about 4 months in the future. My dentist interacted with my wife, he never acknowledged me. My psychiatrist is beginning to do the same - except she still looks at me. I haven’t had discrimination from the general public and I have no community behind me. My wife and I are totally isolated. I once was optimistic, too. I taught classes on it. I live in grief, too.
Tilly, I am glad you posted this, I know you had your misgivings but this is Substack, and people care on here. I am so sorry you have had those dreadful experiences of so called human beings treating you so appallingly. I cannot believe what that awful woman at the playgroup said to you! I would not dream of insulting you by telling you to look for the silver lining. It's so patronising and unless people have had personal experience of what someone else is going through, they have no right to come out with such platitudes, however well meant. People just don't think do they? You're amongst friends here Tilly. Your outfits cheer us up no end and I'm so glad you had the courage to go ahead with this piece. I've subscribed to you, and looking forward to more like this. Lots of love. Xx
A brilliant piece. I feel sick at the level of malice and indifference you have faced. My sister has MS, so I am very familiar with much of what you say. I am not an optimist. I find people these days are very selfish indeed. They don’t get COVID vaccines because they don’t need them—no thought to what they might do to others. I’m afraid I assume there will be access issues, etc.. right from the start. I make a the biggest stink in creation if things aren’t managed so that everyone can participate in events. But it is not enough. My sister had to leave her job in her Ph.D. lab not because her brain didn’t work but because people wouldn’t help her reach glassware she needed which was stored on an upper shelf she couldn’t reach. People don’t think. They can’t be bothered . Some people really do care, and that is inspiring. But it is not good enough. All of us will get older, and we will face the natural decline in abilities that comes with age. Then everyone learns too little too late what having a disability is like.
You are one of the people who brightens my day every time you post. You do me good and I thank you. I hope my engagement with your posts makes you happy in return.
That essay is really powerful. You do such a good job of detailing the additive effects of each person’s decision not to be bothered . I am so proud to know you even at a distance. You have been resolute. And it has not changed your nature even if your worldview is less sparkling.
My sister does a lot of stuff online—wheelchair Pilates and tai chi as well as multiple art courses. Her drawing hand is becoming more affected, so her choices have narrowed, but she still does really well. I am always very proud of her. She also has friends to take her on outings, and help her have a raised flowerbed she can use for growing herbs and flowers. She lives in Scotland where there seems to be a great deal more understanding of working with disabilities than I see in the US. They help with cots of scooters and things which would otherwise be prohibitive. She has had some very rough patches, but is still doing well.
I wish you all the luck and happiness in the world, but I expect you will be hearing from me on your posts!
As someone who lives with a neurological condition that I was diagnosed with at the age of 40, I can feel your pain just like mine with each of your words.
I remember what it felt like to be someone who thought nothing of getting out of my car, walking into a store quickly to pick something up, never once thinking about every single step, where I should park, how busy is the store, how “disabled” do I look today, how bad is the flu situation right now and should I wear a mask, do I have both of my “sticks”, do I have my phone in the event I fall in the store?
I’ve been mourning that person for the last few years. I’m acutely aware of the looks that I get from people and how differently I’m treated in public based on how “normal” I look today. My condition affects my body differently from one day to the next, so one day I might be able to walk okay, be normal-presenting and blend in, and the next day I might need my walker or not be able to walk at all, and it’s those days that I notice people hurrying to get in front of me in a store because I’m so slow, or say “Oh, honey, let me get that for you” with a pitying look on their face.
It’s those things that have made me stay home more where I can control my environment, but I miss feeling like I belong somewhere out there.
I’m glad you posted your piece, I think it’s helpful for those of us that feel similarly to you to know that we’re not alone.
I hope it brings you some sense of catharsis, no matter how tiny. You matter, you’re important, and kindness still matters.
Wow, Tilly! That’s sobering. You’re incredibly articulate in explaining such complex emotions and touching gently but firmly the delicate fine lines between stigma, reality, sensitivity, hidden agendas and explicit prejudice and nastiness. All the intersections of difference which make our existence so colourfully human are also the perfect terrain for the seeds of discrimination and hatred, creating the illusion that some of us are better, more superior, more “equal” than others. How incredibly beautiful, kind and generous humans can be, it is as much truth as how abhorrent, hateful and inhumane humans can also be.
When my brother was small (and so was I), it was common for people to ask me if I wished he wasn’t disabled and even if I wished he hadn’t been born. I heard so many absurd things growing up. My mum once told me that all I could do was try to teach people about him, so they would not say those things. I took in on the mission and never stopped. But I kind of ‘forgive’ the people who did that to me and my brother in a developing country in the seventies. Fifty years later, in the so-called developed world, post-global pandemic, in the early rise of AI, I cannot comprehend ableism at all. Or any isms, if I’m honest.
Thank you so much Hilra, and so sorry for the treatment you and your brother received. These questions are sadly all too common, and although I always do my best to kindly educate, sometimes the burden of that is great. Thank you for also being here in the fight against it all, and for your ongoing support x
Oh that also reminded me that I never told you the story I once lost after typing in a comment to you!! It was when you wrote about some barriers to your wheelchair on a way to somewhere. I’ll tell you now.
Once, I asked a young person to write me a list of the accessibility barriers they had encountered in this building where I worked. This was because this person was leaving soon and I realised we had never finished a conversation on that topic and I didn’t want to miss their insight. The main reason for that was because this young person was one rare case of disabled person who was also a high profile therefore had a voice. Which wasn’t always the case for the wheelchair users before them.
They wrote me a list. Not only the list was far longer than I anticipated, but the simplicity of the solutions was mindblowing. They had asked the correct department to address these and after nearly two years, they were leaving the building without seeing those issues addressed.
I was also deeply disappointed in myself for missing so many of the issues they pointed out! Now they seemed so obvious. Like a speed bump in the car park that is simply impossible to go over in a manual chair, unless someone lifts/pushes you! A door that has a button but you can only access it if you get out of your chair (or someone presses it for you). Same door, on the way out, needs to be held open by an almighty strong arm, while you wheel yourself out. I had never given that door a second thought as I very rarely left the building that way. But that was the only exit wheelchair “accessible”, if you were in a certain part of the building.
Anyway, I gave that list to the appropriate department and explained it has come from said person who was happy to be named, knowing their name meant something.
The person receiving the list thanked me and said they’d bring it to the next whatever name of boarding meeting for discussion. A year later, the bump was still there and I was on my way out of the organisation, so went there to remind them of my now old list. I was told it would be included in the next such and such, whatever they said, but this time the person added “but we are not likely to do anything that involves any costs any time soon”.
And that was the story of that list. I am convinced that if I go to that building today, I will find the bump and the door and most likely every item of that long list.
I should have put a disclaimer that there wasn’t a happy ending.
I hope this doesn’t feel burdensome but - I think you should use this as the seed for a book. I know - “who will read it”, “why bother?” Sadly it is necessary medicine. Our collective failure to develop our humanity must be seen. Your writing is clear, strong, unabashed. Those are such important qualities.
I’d also like to offer that I was born one of the hopeful as well. I remember being very young and heartbroken when I realized that I could never possibly get to meet and become friends with the tens of thousands of people who lived in my city. I still love people. But living in America it’s clear we’ve lost sight of our own humanity, if we ever really had it.
Again, back to burdening you - if you don’t shine a light on our darkness, who will?
Oh Tilly, I am so moved by your words and that you shared them with me and with us. My beloved husband lives with a profound chronic illness and we have experienced so much hurtful neglect out in the world that it has broken my heart and his. Please know that you are not alone. Thank you for your candor. I want and need to know how ableism and discrimination affect you and others who live with disabilities so that I can do better at reaching out with support and kindness. You are very brave. And your creative life with color, and clothes, and spreading it all about is brilliant! Sending so much love to you!💕🙏🏼🌞
Oh, my heart – this resonated with me so profoundly. I too have always been an optimist and believed in the inherent kindness of people. The past few years have been utterly brutal and to hear that framed as grief is extremely validating. It’s exhausting to constantly have to advocate for yourself as a disabled person. Even the occasional wins come at such a cost to our humanity, as we are often required to expose our deepest vulnerabilities in order to preserve our dignity – an oxymoron if ever there was one. I am so grateful that you chose to post this. It has helped put a voice to so many of my own feelings, and helped me feel much less alone today.
Thank you J - this is all that I hoped when I posted it. Thanks so much for this comment.
Thank you for sharing your vulnerability as you contemplated whether or not to post this. You modelled compassion for others in your warning and disclaimer. What you have written will allow others to take a breath and feel understood. You are a "soul gift". I am grateful to have you in my Substack community.
I've restacked - because your words matter, your point of view matters, your experiences matter, you matter.
I hope sharing this will be a good experience. We can't make up for how you were wronged, but we maybe can add some positive long distance humanity to the scales.
Thank you for sharing!
Thank you for sharing. This took tremendous courage.
Tilly, thank you. i have added to my quotes list of 2025 your words, “If grief is love run backwards, then I loved humanity so much….” This is a beautiful reminder of what grief truly is: the absence of something longed for. I’m sitting beside you in your grief - trying to share it as best I can.
That’s horrible that you’ve been treated that way. I can no longer walk without help. We’re going to look into a walker. I keep thinking/hoping I can gain control. I grieve for the person I once was. I have scoliosis and my body, which I now HATE, is turned to the right. My neck is damaged. I walk with it down. I also have dementia. My neurologist made a follow- up appointment about 4 months in the future. My dentist interacted with my wife, he never acknowledged me. My psychiatrist is beginning to do the same - except she still looks at me. I haven’t had discrimination from the general public and I have no community behind me. My wife and I are totally isolated. I once was optimistic, too. I taught classes on it. I live in grief, too.
Tilly, thank you for publishing this piece. It needs to be read and internalized by so many.
I admire you so much. I wish I could meet you in person. Till then, here’s a virtual hug and continued optimism from across the pond. 💝
Tilly, I am glad you posted this, I know you had your misgivings but this is Substack, and people care on here. I am so sorry you have had those dreadful experiences of so called human beings treating you so appallingly. I cannot believe what that awful woman at the playgroup said to you! I would not dream of insulting you by telling you to look for the silver lining. It's so patronising and unless people have had personal experience of what someone else is going through, they have no right to come out with such platitudes, however well meant. People just don't think do they? You're amongst friends here Tilly. Your outfits cheer us up no end and I'm so glad you had the courage to go ahead with this piece. I've subscribed to you, and looking forward to more like this. Lots of love. Xx
This is so powerful and heart-breaking and I thank you for sharing it. You are a beautiful writer and a beautiful person. 💜
A brilliant piece. I feel sick at the level of malice and indifference you have faced. My sister has MS, so I am very familiar with much of what you say. I am not an optimist. I find people these days are very selfish indeed. They don’t get COVID vaccines because they don’t need them—no thought to what they might do to others. I’m afraid I assume there will be access issues, etc.. right from the start. I make a the biggest stink in creation if things aren’t managed so that everyone can participate in events. But it is not enough. My sister had to leave her job in her Ph.D. lab not because her brain didn’t work but because people wouldn’t help her reach glassware she needed which was stored on an upper shelf she couldn’t reach. People don’t think. They can’t be bothered . Some people really do care, and that is inspiring. But it is not good enough. All of us will get older, and we will face the natural decline in abilities that comes with age. Then everyone learns too little too late what having a disability is like.
You are one of the people who brightens my day every time you post. You do me good and I thank you. I hope my engagement with your posts makes you happy in return.
Thanks Alexandra, you totally get it! Appreciate your comment and condolences to your sister for all she has lost at the hands of others x
That essay is really powerful. You do such a good job of detailing the additive effects of each person’s decision not to be bothered . I am so proud to know you even at a distance. You have been resolute. And it has not changed your nature even if your worldview is less sparkling.
My sister does a lot of stuff online—wheelchair Pilates and tai chi as well as multiple art courses. Her drawing hand is becoming more affected, so her choices have narrowed, but she still does really well. I am always very proud of her. She also has friends to take her on outings, and help her have a raised flowerbed she can use for growing herbs and flowers. She lives in Scotland where there seems to be a great deal more understanding of working with disabilities than I see in the US. They help with cots of scooters and things which would otherwise be prohibitive. She has had some very rough patches, but is still doing well.
I wish you all the luck and happiness in the world, but I expect you will be hearing from me on your posts!
Thank you for sharing Tilly I am grateful that you have used your voice in this way. You are a powerful and poignant writer 🙌
As someone who lives with a neurological condition that I was diagnosed with at the age of 40, I can feel your pain just like mine with each of your words.
I remember what it felt like to be someone who thought nothing of getting out of my car, walking into a store quickly to pick something up, never once thinking about every single step, where I should park, how busy is the store, how “disabled” do I look today, how bad is the flu situation right now and should I wear a mask, do I have both of my “sticks”, do I have my phone in the event I fall in the store?
I’ve been mourning that person for the last few years. I’m acutely aware of the looks that I get from people and how differently I’m treated in public based on how “normal” I look today. My condition affects my body differently from one day to the next, so one day I might be able to walk okay, be normal-presenting and blend in, and the next day I might need my walker or not be able to walk at all, and it’s those days that I notice people hurrying to get in front of me in a store because I’m so slow, or say “Oh, honey, let me get that for you” with a pitying look on their face.
It’s those things that have made me stay home more where I can control my environment, but I miss feeling like I belong somewhere out there.
I’m glad you posted your piece, I think it’s helpful for those of us that feel similarly to you to know that we’re not alone.
I hope it brings you some sense of catharsis, no matter how tiny. You matter, you’re important, and kindness still matters.
Dear Tilly, thank you for writing so bravely about your grief. Your courage is an inspiration to me. I am holding you in my heart.