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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!

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Climbing Mountains

I did that climb once. The stairway 665 meters up a mountain in Northern Ireland. That was one of the last hikes I ever did. It was tiring, but I made it up and down again with my group. I was really proud. Almost exactly three years later, the change in my abilities and my health is stark. I struggle with pain and exhaustion from a simple walk around the block. That is a physical challenge for me today.

It’s difficult to accept that change. Because I don’t know what is causing it, I can’t say whether one day I will be able to get back to where I was. At the same time I can’t say that I won’t continue to get worse and eventually not even be able to make it around the block at all. I wanted to get into hiking. I moved to Scotland with the picture of breathtaking mountain climbs and hikes through the rugged landscapes in mind. Those never happened.

I try to accept that people change and that not being able to hike a mountain doesn’t make me bad or lazy or anything really. It just makes me what I am. I have tried to push myself physically with stubbornness and determination and that did not end well. It wasn’t worth the way it hurt my body. Walking around the block and doing a little yoga is much better than nothing at all. And I’m grateful every day that I am able to move my body even a little bit because now I know how quickly things can change.

I wanted to climb mountains. Maybe I will one day. Or maybe my mountains just look a little different.

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The Fog

In the past few years life has become increasingly confusing. As time goes on my days only seem to get foggier rather than clearer.

The Peaceful Fog

Sometimes it’s nice not to be able to see what is coming. You don’t have to think about it because the fog is so heavy that you can only just see your hand in front of your face. So, that’s all you focus on. During those times you can sit happily and forget about everything going on around you, behind you, and ahead of you because the fog blocks out everything. These are the times were you get to leave reality, where blocking out the world makes the days more peaceful.

The Frightening Fog

Sometimes it’s scary to be stuck. Sometimes you desperately want to claw your way out of the little foggy space you find yourself in, but it’s impossible. This kind of fog comes in when there are scary things happening. Those days where you are floating in a daze because you can’t quite grasp what’s going on around you. But it’s not peaceful. You want to be able to see clearly and get a grip of the situation, but you can’t. Like in a nightmare where you want to scream but no sound comes out. That’s the frightening kind of fog.

These are the places that my writing comes from. From this strange place I find myself in, where some days the fog is thick and opaque and some days it lets some sun shine through.

Dear Social Media

It’s the darkest time of year. The time where it feels like you are on the outside looking in at everyone you know behind a glass. They are all happy and celebrating. Seemingly from behind that glass, they don’t have a care in the world. You feel like all the cares have somehow managed to accumulate in your head instead.

During the holidays emotions become stronger, every word takes on a slightly different meaning, time stands still and somehow also moves faster, depending on the day. It’s a week that seems like a year but a day that seems like a minute. People either come out of the woodworks to show you they care or they stay farther away than they have the rest of the year.

In a pathetic attempt to protect myself from the reality of the season, I find myself scrolling more than I have any other month of the year. Even though what I see makes me more emotional, more irritated, I delude myself into thinking that the distraction is a positive one. I follow along in strangers’ lives because I don’t want to be present in my own. Being a part of their holiday whether it be more extravagant and pretty than mine or whether it be tinged with some dramatic tragedy that I have not yet had to face, I want to be absorbed in it. After I put down the phone, I feel guilty for not being fully present in the holiday unfolding right in front of my eyes. But if I was I think my head would explode because your own holiday has all your own baggage within it. All the memories, all the people, all the thoughts and feelings, all the fights, all the love, all the misplaced love, all the misunderstood love, all the other misunderstandings, all your past. It’s all there in the dining room, in the kitchen, in your childhood bedroom.

I’d so much rather follow along in the Christmas of someone else. They’re lives seem easier for me to comprehend than my own. I can read their resolutions and their gratitude lists rather than attempting my own. I know this is not the way it should be. There are times I see something that triggers me into a panic. Then I vow never to look again. Within minutes I have to see what has gone on. The upsetting post is forgotten as I watch someone make their favorite recipe or take their child to see Santa.

During this time I long to not be alone. The screen shows me all I could ever want. People who could be my friends, people who could be my enemies if they came out from behind the screen. They create another world for me to be in when my own is too much.

Photo by Tim Mossholder on Pexels.com

Dear Gratitude

Gratitude is forced upon me by the outside world

By people who want to tell me what my life is and isn’t

By people making assumptions about the way I live

About what I have and what I am lacking

When in reality

Nobody knows anything about others

Nobody knows what happened to you except you

Your gratitude comes from within not from a holiday or a relative

You do not need to be thanking the universe all the time

Simply for being alive

Because that life might be full of despair and anguish

And that’s okay

There will be periods of immense thankfulness

And periods of deep anger at the world

They come and go

They are not controlled by a schedule on a calendar

We cannot control the events or the feelings

We can simply live them all.

Dear Healthcare,

My body already doesn’t feel like it belongs to me at the best of times. Whether it be emotional or physical changes due to medications or simply due to a physical condition, I almost never feel in control. This is never more true than during medical appointments. I have encountered just one doctor throughout my life who asked for permission before each and every single thing she did. Even the small things: touching my shirt, touching my arm, taking a blood pressure. That made me feel like I was a human being who had autonomy over my body and all its parts. It made me feel like I had a part to play in my health rather than being someone’s science experiment. Those are the little things, which most people just take for granted at a typical appointment. Of course the nurse can take my blood pressure, otherwise why am I here? That’s not the point. The point is she is taking MY blood pressure. MINE. Therefore, I should be the person who decides when this happens. 

During some appointments I don’t even feel human anymore. I am being moved around, poked and squeezed without ever having really understood why, let alone given my permission.

I believe this should be the standard throughout medicine even for young children. A lot of my medical trauma originates from being held down at doctor’s appointments as a child, not given a choice in what was happening to me at all, and not understanding why it was happening. Of course children cannot give their own full consent for major surgery or treatments because they are unable to understand the full consequences or their situation like the adults and medical professionals around them can. However, within these things there is still room for discussion and asking permission. Furthermore, in non-life threatening instances and/or casual check-ups there is definitely flexibility to have those conversations with parent, child and doctor/nurse. 

Especially when there is anything that involves touching a child (or anyone’s) body it is crucial that they understand at their level 1. Why this is happening 2. What is going to happen exactly 3. That they say yes this can happen now. If they say no this cannot happen and are in a calm frame of mind, maybe it doesn’t need to happen right then. Maybe it can happen in a few minutes after a deep breath or a little further conversation. 

It often surprises me that in 2022 healthcare professionals still don’t see the need to ask. They say to me (as an adult) “this is what we’re doing” “lie down” “put your arm here” etc. The other day, my arm was grabbed and forced over my head without even asking me to move it first or asking my permission to do so. This upset me greatly. If I had been calmly asked to move my arm I would have moved it, of course. If they had asked permission to position it for me, I would have let them. The way they chose to do it has a bad outcome for me mentally (and physically because it’s uncomfortable). 

Consent, permission, discussion, patient inclusion, all these things and everything associated with them are crucial for a kind and compassionate healthcare experience. It can make it not only smoother for the patient but also for the provider as well. Fewer screaming children or tearful adults, such as myself, and better outcomes in the long run. The doctor’s office does not need to be a place children, teens and adults alike fear because they are going to get restrained and hurt by scary people with scary devices. There is another way. Adults don’t have to feel that fear either, whether it be with them from childhood or newly-acquired from a recent procedure. This way, people are more likely to attend their cancer screenings and other vital appointments and to engage positively with the healthcare field throughout their life. 

So, if you are going to touch someone else’s body or do anything else to it and that person is conscious, ask them for permission. Explain what is happening and why and allow them to have the control of saying yes or no. 

Dear Good Day,

I am so grateful to have you. You have been so kind to me today. After so many years with so many bad days, the good days shine so brightly. These are the days I never want to end when it gets dark because I don’t want to face the possibilities of all the things that could go wrong the next day or the next day after that. These days that are filled with laughter and sunshine and peaceful thoughts and love are so few and far between and so valuable. They change the way I see the world. They change the way I see my life and suddenly I want to be here to experience all this beauty over and over again. They show me that joy still exists even after grief and trauma. It is still out there and some days it finds you.

The good days also give me my deepest fears. They make my anxieties come to the surface. I am not comfortable with good days because I am so unused to the feeling of my body letting go. I am so unused to the feeling of something going right, of a stranger smiling at me or of winning a prize. I am used to the fight or flight mode, the disasters, the fighting off each other as it speeds towards me. When the day is good I know it will end eventually. I know something will happen to end the good streak and that something will hurt like hell. It will hurt so much more because of the good day before it. The contrast so sharp that it stabs you. The good days make me think back on the bad days and make me wish for no more days because the thought of the bad days to come in the midst of a beautiful one is so overwhelming. Sometimes on good days I want to quit while I’m ahead. I don’t feel like waiting around for the next tragedy or the next cancelled train or the next illness or the next downpour. I just want to rest in the peacefulness of this good day.

There are always going to be good days and bad days. Good moments and bad moments. Forever. For everyone. I have yet to accept this. In the dark moments I still believe that all my moments will be dark. On the good days I still feel a fleeting euphoria that cannot last. Temporality is part of life. Good and bad will both end and both will come again. No matter what I do or what I think or what I pray. I try to remind myself to hold onto the feelings that the good days bring. They are so much stronger now than before I experienced pain. Therefore, the pain was part of giving me the good. Without it, I would have seen this day as just average, not an amazing gift. As I write this late in the evening I am having a hard time giving this good day away to the night. Knowing that an unpredictable day is coming where anything could happen. It could also be good, I don’t know. I have to let go and just see. Meanwhile, I think it’s pretty clear I don’t take good days for granted anymore. I savor them and sit with them for as long as I can and then I wait for the next one to come around.

Dear Breast Cancer Awareness Month,

Bringing awareness to different diseases seems to be a big part of the “community spirit” within the chronic illness and Disability communities. My social media is filled with awareness posts all the time as I follow people with all kinds of different illnesses, all of which have their own special months. September is Childhood Cancer Awareness month and October is Breast Cancer Awareness Month. Both of these are difficult for me, but October is hardest because breast cancer has been such a big part of my life lately. 

Bringing awareness is crucial. For funding and general decreasing of stigma and inclusivity etc. However, for someone who is already more than aware of the existence of these things, their awareness months are months full of triggers. I have a sibling who is a pediatric cancer survivor. They are many years out, and so September is pretty much the only month I start to think about that time in the past or possibility of recurrence or anything like that because it is all around me. My mother was diagnosed with breast cancer in 2020. That changed our lives forever and still impacts us today. That time period during her active treatment was highly traumatic for both of us, especially being in the middle of the pandemic. 

Since then, I have myself been diagnosed with dense breast tissue and have “extremely high risk” of developing breast cancer. The benign lump sitting on my chest needs checking often and it is a constant reminder of what might be to come. In my nightmares I think about the day I will be brave enough to explore the preventative mastectomy. Therefore, it is only natural that whenever I see the pink ribbon I feel sick to my stomach. Whenever my Instagram shows me an awareness post of a young woman demonstrating how to check for lumps it makes me cry. Because of my life with illness, I do use social media to connect with people in similar situations and to be inspired, in a way. When I am in a stable place, I am able to read people’s inspiring posts and be happy for the people running a marathon after chemo or having children or ringing the bell or whatever they post about. But when I am in a fragile place, or my lump is hurting, or my mom is sick or I’ve just had an appointment or even with no clear reason, one post with the ribbon can send me into a full-blown panic attack. 

Breast cancer is horrifyingly common. That is a fact. Checking for lumps can save your life. That is also a fact. Especially for young women who are not offered mammograms. We must be our own advocates. I am well aware of all that. The awareness campaigns are important and great. Rational Me knows that. Emotional Me is terrified of them. They make me think of my friends or family being in that statistic that is blared at us all month long. It makes me worry 100 times more about my own future and how I handle my cancer risk. 

Sometimes these months also angers me because people see those short awareness videos and think they know what breast cancer is. I know I can’t claim to know either because it was my mother’s experience, not mine, but from the sidelines I can say it is so much more than finding the lump and saving your life. It is something that scars you in so many ways, scars your family and friends and changes your life no matter how hard you try to stop it from doing that. It completely transformed my mother and transformed me as her daughter as well. People’s view of it as “the easy” or “good” cancer is difficult to swallow. If only they could see us. 

Lastly, during October the vast majority of the awareness is put on the “young person finding a little lump and having it all sorted out” storyline. There is almost nothing around about metastatic or stage 4 breast cancer even though that is what kills women every day. That is the stuff that even awareness campaigns are wary of touching because it is real and terrifying and much harder to stomach than the happy ending they try to portray. There are very effective drugs out there to treat Stage 1 breast cancer, this is true. Finding it at that stage is also a very important step, that is true too. But some people never find a lump. Everyone’s story is different. Metastatic breast cancer has much much fewer treatment options and yet it is often hidden away from the pink ribbon story during October. 

These months are important. I am grateful to those people who are in a place to be able to share their stories and raise awareness and talk about breasts and lumps and everything else. I am personally not there. October is really hard for me and my family and I spend a lot of it hiding away and this is why. 

But finally, check your breasts. Ask your doctor questions. Be a self-advocate always. 

Dear University,

I was supposed to start my last year of college this month. Instead, I left university. What lead me to this decision was fighting the administration of my school for more than two years about preserving accommodations set in place during the pandemic for students such as myself who were directly or indirectly impacted by COVID-19 in way that prevented them from returning to traditional college life. I realized in that time that the pandemic gave institutions, including my school, a chance to pretend that they cared about vulnerable members of their community and then quickly forget about them. At the beginning of the pandemic, it seemed that maybe this crisis might change how people viewed Disability and chronic illness and we could come out the other side with more empathy and more accessibility. Instead, it seems that return to normal means return to ableism.

Students of all ages were affected by COVID. For students who already had stressors in their lives such as being at high-risk for severe illness, being a caregiver, losing family members to Covid, or struggling financially the effect was more dramatic. This stress is clear in numbers of students who left college early on in the pandemic. In fall 2019 2.6 million students started college in the US. 26.1% of them did not return in fall 2020.[1]

When my university transitioned to remote learning in 2020, I thought it was going to save me. My mother had been diagnosed with cancer, and I had my own health issues to deal with. With access to distance learning I could deal with all that and get a degree. The school was telling students that it had invested a lot of money in technology for remote learning and to accommodate students’ needs. I believed them, but soon found out that all the promises were short-lived.

After one semester of online learning, the university was ready to go back to “normal.” I learned from speaking with other students with chronic illnesses and other needs that the decision to abandon remote learning so suddenly made them feel forgotten. Even though we had been promised accessible learning through the crisis, the end of the crisis was decided by someone’s opinion; someone who failed to consider the people whose crisis was nowhere near over.

Like many students who were hesitant or physically unable to come back to campus, I felt  pressured by the administration. One of the ways they did this was to inform me that I could not receive support from the school remotely. If I needed any kind of support with my studies or otherwise I could only get this when I returned to campus. This was impossible for me at the time- being in another country with a sick parent to care for during a global pandemic. Throughout the last two years in school, I was not included in class discussions, and there was more than one day when I sat at a blank screen when the professor forgot about me or did not bother turning on the computer that day.

My school was aware of my personal circumstances. In response to my many emails over the years I received the same automated email saying I should really “try harder” to get back to in-person learning. With all the tragedy that came with covid, we also had an opportunity to change for the better when it comes to access to school and work. This was also illustrated by the “mass-disabling” event Covid is. It is estimated that Long Covid is keeping up to 4 million Americans out of work.[3]

It is sad that despite all the promises early on in the pandemic, the return to normal somehow justifies the return to ableist attitudes. The idea behind accessibility is that all people can be included. In terms of remote working and learning, those who are not interested in that option are not forced to use it while people who depend on that option can use it with great benefit for everyone involved. Allowing me to continue to use remote learning could have saved my degree, but my university’s response to the “end of the pandemic” took that away. We should have seen that we were doing something good in paying more attention to accessibility and inclusion but instead it seems that the people in charge were never sincere about changing things. They were just happy when they could go back to the way things were without considering those of us who will never be able to do that.

[1] https://hechingerreport.org/more-students-are-dropping-out-of-college-during-covid-and-it-could-get-worse/

[3] https://www.forbes.com/sites/williamhaseltine/2022/09/02/long-covid-is-keeping-millions-of-people-out-of-work/?sh=4939f2d952cc

Dear Fellow Patients,

I don’t know if I’m the only one, but I think A LOT about the last two years. The pandemic and everything that came with it changed my life forever. For many reasons.

Many nights I lie in bed and flash through defining moments of the pandemic. I think about my responses and my feelings at the time. I doubt myself; wonder if I was thinking the right things. I always come back to one specific moment. It is one of the biggest regrets I have.

I was sitting in the lobby of the oncology ward at the hospital. It was the height of pandemic panic and the chairs were strictly distanced and parted by red tape and angry red stickers on the floor. A young woman came and sat at the other end of the room. She got out her phone and called someone. And then she started crying and said “it’s cancer mom, it’s cancer.” Then her crying got my intense. I could hear her sobs and her words but she was many red stickers and tape away from me. I was locked in my seat, but I was feeling all her emotion. (I wasn’t just sitting on the oncology ward for no reason after all). I could feel my own eyes well up with tears as I was witness to this incredibly traumatic moment in this woman’s life.

Once she had hung up, she sat numbly for a little while, tears still coming down her face. Then she put her phone away, put on her backpack and walked away. After she was gone I went to the restroom and cried my eyes out. For her. And also for another reason. I was so incredibly angry at myself. That whole time I had sat frozen and terrified of the meaning behind those red stickers. Had it not been pandemic times, I want to tell myself I wouldn’t have hesitated to run over and give her a hug and ask her if she needed anything at all. I would have told her it was going to be okay even if it didn’t feel like it in that moment. But I didn’t do that. The rules were so strict at this point. We were all so scared of catching COVID. Especially on an oncology ward. I was afraid that I would then make her sick or her me. That maybe me violating social distancing would make her even more upset.

But two years later I still regret everything about that moment. I should’ve gone for it. I should have let her see I was crying with her. That she was not alone. Because in that moment she must have felt so so alone. I should’ve stepped over that tape and on all those stickers and moved the chair and been with her. Human to human. Allow her to cry on my shoulder instead of into nothing. Reassure her. Hold her and her terrible news to make it a little less heavy. But at that time, I didn’t. One might say that the fog of the pandemic was hanging over me so intensely that it actually prevented me from seeing what the right thing to do was. I regretted it immediately as she walked away and I still do.

I know how I would do it now, COVID or not. I vow to remember that young woman so that I can do the right thing next time. Isolation in times of crisis is one of the most painful things that someone can experience. Be with each other. Hold each other. Love each other. Family, friends, strangers. Everyone.

Photo by Lisa on Pexels.com

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.