Don't you have mercy on yourself?
This edition is about the “slithering voice that says you are not ready”, whether it's what we tell ourselves or what we hear from other people.
We do a tour of videos that show experiences of disabled people and activists in our movement around the world. And, closer to home, I share struggles I've been having with rehabilitation.
I'm also very happy to welcome a substantial support to the Debrief from, of all places, a friend made at an elementary school I attended for less than a year. It's changed what I can do this year.
Last week we healed healthcare and much of today's edition resonates with those issues.
Courage arises from fear
“Do not be fooled by the slithering voice that says you are not ready, not yet not enough”. Let it Pass is an animation from Uganda on the lived experience of anxiety.
“Are you pregnant? In your condition? Don't you have mercy on yourself?” Sarah is a short movie from Kenya on disability stigma. It dramatises the barriers I wrote about to access healthcare: challenges accessing transport, stigma and how she is turned away. The scenarios are slightly blunt but the characters and language are wonderful.
- Let's end disability stigma: a short video sharing all-too-real examples of discrimination people have faced, including a restaurant that turned away people for using sign language, and medical staff saying someone was not fit to be a father because of his disability.
“They only need to learn two words: yes and thank you.” Devastating insights into the “learned helplessness” of being confined in an institution in Hungary. Fortunately this film is about how István became “director of his own institution” through supported decision making. He learned to say “no”.
- See also last year's Debrief on escaping institutions.
“My courage arises from fear”. Short profiles of human rights defenders with disabilities from Brazil to Kyrgyzstan. Whether they are approaching rights through advocacy or assistance, these profiles show the barriers they face as they work for inclusion.
“The innocent are presumed guilty: People assume I can't do something until I prove that I can.” Friend of the Debrief Mostafa Attia talks about how his Youtube channel is changing attitudes. He talks about broadening the scope beyond the usual topics of disability and the importance of practical experiences, for him and his viewers.
Note on accessibility: unfortunately Mostafa's interview and the videos from Kenya and Hungary have their English subtitles embedded, without transcripts.
When my mind comes crashing down
For much of the past few months, I've been in better spirits than I can remember, happy with what I'm doing and excited for new projects. My world has been full of possibilities. A good part of that was my rehab going well. My hip-replacement went was successful, I'm no longer in pain, my body feels like things are in the right place, and each week I can do a little more.
But our bodies are also made of memories, and they can hurt. The mobility before my initial accident no longer hurts to remember in the same way it did. But a fresher comparison does. Last year's hip-replacement was the second operation after my accident in 2021, and while I came out of it with better mobility than after the first, I painfully realise that my progress was faster the first time around.
My realisation is confirmed in devastating detail by the notes I took on exercise. At this stage, five months after the operation, my functioning and mobility were considerably ahead of where they are now. My mood spirals.
When I fall at home I have an alarm to press and people will come and help me to stand up. And when my mind comes crashing down? I know there are people I can call. A friend's text comes in, asking how I am. But I don't answer: I don't feel able to.
One of the hardest things about this journey is how its experiences feel so isolating. Not for the first time since my accident, and surely not for the last, I am lying down, curled up, crying. I'm exhausted, defeated. My future is empty of promise.
Afterwards, I share. My friend Basem tells me كل حاجة لها وقتها, everything has its time, and that in life's difficulties it is natural to feel sad. Cousin Filipe tells me “o caminho se faz ao andar”, the path is made as you walk it, you don't know where it goes. My physio and my surgeon both tell me I'm doing great and that the second operation has a more complex recovery than the first. They say that I'm being too hard on myself.
This is one of the repeating moments in rehabilitation. Me being hard on myself, yes, but more so, these moments of defeat. Rehab puts you in an impossible balance of not doing enough and doing too much. If you underdo it, you will not recover; if you overdo it, you put your recovery at risk. Every day, I reach my limit, I give up. I have to.
And each time, I try to come back from defeat, to pull my mind out of the mud. I am comforted by the care people show me. Perhaps the most painful isolation in these moments is the isolation I feel from myself. I drag these difficulties out of me by putting them into words. I try to make my path and remake my hope.
“There must be those among whom we can sit down and weep and still be counted as warriors.” My friend Jo sent me this Adrienne Rich line. I don't see myself as a warrior. Jo suggests to reword it as “still be counted as ourselves”. I hope I can hold onto that the next time I'm weeping.
A bridge not a barricade
Some of my favourite quotes from recent news touch how disability isolates, and how we connect from there:
- “I see my disability as a bridge and not as a barricade” – Lois Auta-Udonkanta.
- “All of the systems are set up to really dehumanize disabled people and not to help us.” – Debra Guckenheimer
- The boundary [between respect and disrespect] “matters greatly to all of us, but we often don't appreciate the amount of work required to turn the disrespect into respect.” – Oana Branzei
As for how we get to inclusion, the Debrief has explored the dangers of tokenism. It turns out this concern is shared by none other than Pope Francis:
“There is no inclusion if the experience of fraternity and mutual communion is missing. There is no inclusion if it remains a slogan, a formula to be used in politically correct speeches, a flag. There is no inclusion if there is no conversion in the practices of coexistence and relationships.”
“I had to find my own resources to get better”
Speaking of coexistence and relationships, thank you to the many readers who have given one-off, annual or monthly donations to support the Debrief after my fundraising call at the end of last year. This support allows me to put more of my time into making this for all of you.
Particularly transformative is an extraordinarily generous donation from my friend K Li, who told me how his own health experiences inspire his support:
“I've been struggling with Chronic Fatigue Syndrome for about 3 years now and I've seen how little support there is for disability in the US. I went from physically super active, biking 10 hours a week, to not being able to ride 30 minutes a week in the span of 6 months. My doctors couldn't diagnose me for years, health insurance for mental health in the US is appalling, and I had to find my own resources to get better.
“I now appreciate disability much more and realize it could happen to anyone at anytime. Any work to improve disability awareness or benefits, for both mental and physical disability, are worth it!”
When I was 10 years old, my dad's work took us to the US for a year, and that's where I met K. We loved playing the same games, and meeting K was the first time I'd found a friend that I had so much in common with.
I remember saying goodbye – K, as ever, smiling, waving through the window. I don't know if I was smiling: I know immediately afterwards I was in tears, my heart hurting. Little did I know that through years of travel I'd become all-too-familiar with the painful wrench in your gut as you are separated from those you love.
It mends my 10-year-old heart to know that, more than 25 years later, K is backing me up as I try to follow my dreams.
For US taxpayers who want to give me too much money: Donations of $1,000 or more can be made through a 501(c)(3) thanks to our partners Center For Inclusive Policy.
Tell me about your dreams, or the slithering voices. Leave a comment, or find me elsewhere.
Let's be counted as ourselves,
Thank you for reading, and thanks to the friends who help me lift myself up. Thanks to Tan Kuan Aw for the illustration of isolation, and the conversations we've had around it.
This edition counts on support from Sightsavers, K Li, and the people and organizations that read it.