Disability Pride Series: Conclusion?

July is coming to an end. Just because Disability Pride Month will be over, doesn’t mean that people with disabilities should stop talking, advocating and educating. On the contrary.

This July was my first pride month, acknowledging my disabilities, writing about them and engaging with the disability community online. I was inspired by what I saw and read. I hope that one person might have read my posts and felt something similar.

During this month I have also engaged with stories and experiences of the negative sides. The reasons why people are unable to be proud of who they are with their disability. Stories of abuse and ignorance and experiences that highlight how inaccessible the rest of the world can really be. It is precisely because of this that we have to keep our voices loud. Every month of the year.

I don’t feel pride in myself every day. In fact, there are still more days a week where I feel like a burden and a sense of shame about my differences than there are days where I feel confident to live without trying to hide. But being able to see the way other people embrace every part of themselves makes me feel less alone.

Disability rights and accessibility has a LONG way to go. It is difficult to feel proud when every day you are put down in one way or another, whether it be the simple inability to get somewhere or participate in something due to inaccessibility or actual bullying or ignorant comments from another person. It can feel like the whole world is against you. And that makes it so hard to claim your place in it and claim it with pride. And yet so many people have done so and keep on trying to do so every single day despite all the challenges. Those are the people I look up to and hope to be one day.

July is over but my journey of self acceptance is only just beginning. Good luck on yours.

Dear Hope,

Someone I admired very much used to say “always hope.”

On days like today where the fog seems unbearably thick, I try to cling on to that.

On days where the world’s problems seem too big to ever be solved. Where your role in this world seems incredibly insignificant, possibly even pointless.

On days where the way out of pain seems too long and you cannot see the light at the end of it yet. When the fog is obscuring that light completely. How can you know it is still there?

When there are so many thoughts running through your head that you wish for some kind of sleep just to find darkness and peace within it.

There must still be hope. You can ground yourself in the firmness beneath your feet or the openness of the sky above you. The sky is still there, the ground is still holding you up. There are still sounds of the regular day like wind, cars driving by, birds, footsteps. Whatever it may be. That regular rhythm is still out there if you listen closely enough. Look up at the sky and remember that it is still there and will continue to be for as long as you look up and see it.

No matter how foggy your world seems.

There is always something or someone in this big, big world of ours. There is something or someone out there. You just have to look up, or reach out.

Always hope.

Disability Pride

July is Disability Pride Month!

I have to be completely honest, before I became part of the disability community I did think of disability as something sad. I didn’t know anyone disabled (I probably did but was unaware) and the way it had been talked about around me was as something tragic.

I was also in deep denial about being disabled. My illnesses were never acknowledged by my family, and still they will run from the term “disability.” Sometimes I struggle to understand their fear of it. It goes far beyond my lack of understanding of disability in my childhood. This is the first year I acknowledge my disabled pride, and yet I still do it almost anonymously because I am still surrounded by toxic attitudes (baby steps).

To be proud and disabled to me is about accepting, loving and empowering the parts of me that are different to the majority of others. It should be about sharing all of myself without trying to hide the “sick” bits. For my autistic side, it means I should be proud enough of myself to unmask. On top of that it means the ability to celebrate things that were once shunned in our society and educate others so that we get further and further from old and destructive mindsets. It means so many things. I endeavor to try to share more about this topic throughout the month here, for whoever wishes to listen!

Despite all there is to be proud of, I still feel the element of sadness. To me, it has to do with the grieving process of leaving behind what I thought my life would be before I understood that I was different to the pictures I had in my mind. It is seeing the sadness on loved ones’ faces when they seem disappointed in my abilities or lack thereof. Disability Pride Month should be about coming to understand the sadness and being proud that it is part of my disabled experience. To understand that it is by no means only sadness– it coexists with a strong, fulfilling, fun and happy life as well.

Stay tuned for more disability pride in July!

Dear Emergency Room,

Another trip to a hospital. This time the Emergency Room. It’s fair to say that when you are in an ER at 2 am, you are not feeling, looking or acting your best. You might even be terrified out of your mind thinking that this is finally going to be something really really bad.

That was me the other day. I was in so much pain. I was crying and upset and scared and tired. I was in a strange city in a strange hospital, my family thousands of miles away. It took many people, many hours, and a few drugs to calm me down. But even when I could breathe again I was still an anxious mess. I wanted to go home and be in my own bed but I also wanted the pain to go away. That catch-22 you are always in when you find yourself in the hospital.

Many hours into my stay someone knocked on the door. I thought it was the nurse with more medicine but actually it turned out to be even better. It was another member of staff who peeked in and said “I saw you were missing a pillow, I’ll bring you one.” At first I didn’t really care. That’s very nice of him but it’s not exactly pain meds. But that pillow was the beginning of me getting to be calm. The comfort that it gave me in being able to relax my head and feel a little more protected, changed more than I would have ever thought it could. After that I realized that the person who had seen me as a person on a mattress without a pillow and actually bothered to go find one for me was the true hero of the day. They had taken into account the discomfort that arises in those situations outside my immediate medical emergency: the discomfort of the hard bed, being away from home, being cold and feeling exposed. That meant so much.

The technician who came in to take me to my scan a few hours later had the same kindness in his heart. He gave me a warm blanket while I was in the machine which he then covered me with afterwards back in the room. It was your typical scratchy hospital blanket but it was warm and it symbolized so much more. Those people could see I was scared, I was vulnerable and I needed comfort. Many people can see that without acknowledging it and not even get close to trying to solve it because that is a lot to ask, especially in an emergency room setting. They are busy and see hundreds of people like me and in much worse condition every day. But that night, that person gave me that extra bit of comfort and it made more of a difference than I could have thought.

Again, it wasn’t because it was my favorite duvet from home or anything, it was the consideration, the understanding and the kindness that the gesture of these items showed me. It gave me a more human connection to the people treating me and gave me “tools” to be able to be calm because I could rest a little more, feel some comfort and be warm. That night I felt the warmth not only from my pillow and blanket but from the people who brought them to me. Thank you.

Dear Night Sky,

I found out the other day that sometimes you see a baby squirrel (see previous post) and now I have found out that sometimes there’s a spontaneous fireworks show or you happen to be in the exact right place at the exact right time for the lunar eclipse.

The last two nights the dark night sky has been lit up in some unexpected way that has allowed me a couple of moments of peace from the anxiety that plagues our every day. Last night I had a perfect view of the lunar eclipse– the first and probably the last time I see something like that so clearly. The word cool doesn’t really do it justice but nothing else really comes to mind. It was just cool. The weather was cool, the moon was cool, I was feeling calm and cool in myself as I watched it. I don’t really understand the science behind how that can happen, but knowing that would probably make it less magical anyway.

I used to be scared of the dark, of being outside at night. Things can jump out at you and you never know what is lurking. But lately I’ve noticed that those things that can come out of nowhere in the darkness can also be beautiful and full of light. Now I look forward to the peace and calm that comes when it gets dark and even hold out a little bit of hope for those rare night sky surprises.

I guess what all these things (including my favorite baby squirrel) have in common is that it is about looking for the good that appears every day (and night). It’s me realizing that if I take each day slowly and look around I can see small and large, surprising and beautiful parts of the world that I have missed up until now. I seek these out now because everything else in our world seems uglier and more difficult than ever before. Look out for the night sky surprises if you feel the same way.

Dear Garden,

Sometimes you see a baby squirrel.

The world is a scary place to be these days. The bad news is endless and our bodies and minds are struggling to keep up with the demands of daily life, which seem a lot more insurmountable than they did just a couple years ago. We are in a space where it can be very hard to get through the day. At least that’s how I feel most of the time.

The last few days of my life have been dominated by anxiety and fear and exhaustion. I start my days pretty slowly and without much enthusiasm, I have to admit. But today I went out in the garden and saw a red squirrel. And from underneath that squirrel emerged a tiny little baby squirrel (I found out after extensive squirrel research that they are called kittens!). The squirrels played around in the tree for a little bit, the kitten always close behind his mother. It was adorable. I might be overreacting, but that baby squirrel (kitten seems confusing just now) saved my day. Maybe it even saved my whole week. While I was watching it explore its home for the first time, feeling safe under its mother’s protection, I felt safe too. That little guy has no concept of what is going on outside our garden, probably not outside his nest in our tree. He was cute, innocent and perfect.

Someone once said something along the lines of “if you are looking for miracles just stop in nature.” Sometimes I’m too cynical to appreciate this because I think nature isn’t really miracles, it’s just biology. But sometimes you see a baby squirrel or a butterfly or a beautiful flower and then you think they were right. We humans can’t seem to get anything right. And somehow they get everything right. If you think of their place in our dark and violent world, they are actually miracles in their own right.

I’ve been stopping to look around a lot more as spring has come. Maybe it’s a little cheesy, I don’t know. Maybe cancer, covid and war has made me long for the miracles that nature can offer us. Just seeing that baby squirrel can make you think maybe there is a little bit of good still left. If I hadn’t gotten up today, I would have missed that. A baby squirrel probably won’t be able to save the world, but maybe they can save your day.

Dear Spring,

Spring is coming back. It used to be a time to be hopeful, a time where light returns and we get to breathe in fresh air and take in the sunshine. Two years ago this vision was spring was interrupted and replaced by a time that was characterized by fear and uncertainty.

This year it’s hard to know what to feel. The sun is out more and the sky is more blue. There are small flowers blooming and lots of birdsong. But if it wasn’t for those little glimpses of the season’s normality, it’s hard to tell that we’re going into a brighter and lighter season. The darkness of the past few years looms over us even when the sky is bright blue above us. The grief and memories haunt us and we are walking on eggshells even if those eggshells are dispersed among the blooming daffodils. While we look at those very flowers we think of the places in the world where these have no chance to grow or they will be quickly and violently trampled.

For me, this will be my first Easter without two important family members. Easter was a big holiday in my family. We all enjoyed it. Coloring eggs, eating lots, getting and giving chocolate eggs and little toy rabbits. I dread it now because I don’t want it to come without those people who I loved and who loved the holiday more than most.

Will we be able to embrace the warmth and hopefulness of spring despite our worries, fears and grief? We will have to wait and see. Enjoy the flowers in the meantime and be grateful for every time you get to look up at the open blue sky.