As Disability Pride Month draws to a close, our Valuable 500 team members have been reflecting on their personal experience of Disability Pride.
Inspired by Ann Magill’s Disability Pride Flag, some members of our team decided to share which colours of the flag they identify with and how their disabilities have made them the people they are today. We love how diverse their experiences are and why they’re proud to own their disabilities.
We share their stories below and encourage you to reflect on what Disability Pride means to you.
Caroline Casey.
Caroline (she/her) identifies with the white section of the flag, which represents invisible or undiagnosed disabilities.
In October 1999 I came out of the Disability closet where I had been hiding since discovering, by accident I had a genetic condition, Ocular Albinism, when I was 17. This was in 1989. At that time, over 30 years ago, I had never seen a person with a disability like mine, living the life I wanted. Disability at the time was drowning in cliches and stereotypes ranging from pity, freak, villain, superhero or worst of all – people who had disabilities were hidden, avoided overlooked and invisible.
At 17, the idea that disability was a cool, positive or sexy part of my identity seemed incomprehensible and rather than it be something I shout about with pride, I feared it would be a barrier to the life I wanted and the dreams I had. Hence, I went into that closet with fierce determination that I would achieve despite my vision impairment and it would have nothing to do with my life.
Who knew what was to happen or to come? Today, after two decades of activism, campaigning, trouble making, hustling and owning and speaking about my disability all over the world, nothing, and I mean NOTHING, gives me more joy, hope or energy than to watch the disability pride movement grow and build momentum. At 50 years old, I genuinely love that disability is part of my identity – my identity, my choice – and I can’t help but wonder what my life might have been like if I had openly embraced and accepted myself sooner. Because for me, quoting one of the greatest women of all time – “there is no greater agony than an untold story inside yourself”.
Hiding who you are for fear of judgment, of being rejected or overlooked is no way to live. Each and every one of us has the right to belong as ourselves and rock our beautiful magnificent difference. The journey to self acceptance is so personal, and takes a life time, but disability pride is a circuit breaker – one that I hope will be part of ending the global disability inequality crisis by supporting everyone in our community to be counted, admired and respected as themselves, where eventually, no one will feel they have to hide away, behind a closed door to know their own brilliance.
Eddie Ndopu.
Eddie (he/him) identifies with the red section of the flag, which represents physical disabilities.
July is Disability Pride Month. This is my love note to us. Disabled adults everywhere who have the audacity to claim their agency and sovereignty, I salute you. And hold you in my daily prayers for cosmic justice.
When I was born with spinal muscular atrophy in Namibia, my mother was told I wouldn’t live beyond five. I came into this life as one physically disabled man of color with dreams of wanting to change the world. But I also came into this life representing the unattended aspirations of the 1.3 billion disabled people who live on the planet today.
I had dreams of becoming an artist. I used to sketch incessantly, and now I’m no longer able to do that. But, on the other hand, my disability has really been a gift in the sense that it has allowed me to dream new dreams.
I still have my spirit. I still have my mind and I still want to be of service to humanity and the world. And so, while I move through the world, with great difficulty, I know that there is so much more that I’m able to offer.
We have a choice to make. To either lead safe, shielded lives in which our bodies are bureaucratically administered and our spirits regulated by what is supposedly in our best interests, or, brave, dangerous lives in which we insist upon what we WANT, as opposed to what we need, even at the risk of perennial precariousness and abandonment. It’s the choice between living good-enough lives and unapologetically brave lives.
We know that to choose to live bravely is always the harder, more painful choice. It’s the sort of pain that is so excruciating and brutal that very often it feels as if we might die under the weight of its intensity. But we know that this pain is preferable to the other pain we’ve been indoctrinated into thinking is somehow good for us.
Well, I say, to you, my decadently glorious disabled brothers, sisters and siblings, eff survival. Choose the dangerous, terrifyingly painful mode of existence: bravery.
Be brave. Be brave. Be brave. Be brave.
Lisa Ahmed.
Lisa (she/her) identifies with the red element of the flag, which represents physical disabilities.
I have had my condition for 40 years and have always required a wheelchair to keep me mobile.
Growing up in the 80s, I was never given the opportunity to attend mainstream schooling as accessibility was an issue. I was given a very basic education in a special needs school, in which higher education or career opportunities were never an option for my future.
I always felt disempowered by society’s perceptions of me as a disabled woman. This led to depression, hating the fact I had a disability and I just wanted to be “normal” and accepted.
It wasn’t until my late 20s that my own attitude changed. I realised my disability wasn’t the issue as to why I couldn’t contribute to society, but how the world is only designed with able-bodied people in mind.
I am now a proud disabled woman, who has achieved reaching my final year of university, a proud single parent to my child who also has a disability and I own my own business/blog.
Disability pride to me means a celebration of disability, celebrating the achievements that people with disabilities have accomplished, despite being met with constant structural and attitudinal barriers within society.
Sarah Clements.
Sarah (she/her) identifies with the diagonal lines of the flag, which represent the way disabled people often have to adapt themselves or their physical routes to get around an inaccessible society.
I have a rare, progressive neurological condition, diagnosed when I was 25, which affects co-ordination, balance, fatigue and speech. 16 years on, I know what it means to be non-disabled, become disabled, and live with a progressive disability. I have experienced the advancement from general mobility issues and difficulty walking, to relying on sticks, using crutches, using a rollator to becoming a wheelchair-user – all of which have exposed me to differing challenges of life with a disability.
Like many disabled people, disability has affected every aspect of my life – family, friends, relationships, finances, work, social life, travel and fitness, to name a few. Independence has involved adapting to an inaccessible world, which can be exhausting, thankless, and at times utterly upsetting. This is what Disability Pride can help change!
The challenges and barriers (and also the attitudes and comments) I’ve faced first-hand have left me astounded. One of the less obvious but most demanding aspects of disability I have found, is the amount of time it consumes. Time spent worrying, time spent researching, preparing, waiting (and waiting), form-filling, completing admin, researching mobility aids, liaising with council and government bodies, time spent considering every aspect of a journey (door to door), conducting recces, reflecting & assessing, time spent checking toilet facilities and time spent worrying about what is to come – like what others are thinking of my mobility decline and my approach to life.
The consequences of the lack of universal/accessible design when navigating a world which isn’t designed for disabled people, has affected my confidence, motivation and ‘progress in life’, but I have also spent a huge amount of time over the years, finding different ways to enable me to do things.
A significant mind-shift for me, was completing a course on Disability & Development. I started thinking about disability in a global sense, and considering the challenges and barriers disabled people face in the developing world. The lack of options and ways in which other disabled people have to navigate the world with no basic infrastructure, and the innovation, resourcefulness and determination required, was eye-opening and enraging in equal measure. This, followed by the opportunity to work for the Valuable 500 and actively participate in significant global change, started me on an incredible personal journey.
In truth, Disability Pride has been a relatively new concept to me. I spent years trying to hide my disability, not speaking about it or even mentioning it, and researching ways to ‘overcome and cure’ my condition. What does Disability Pride mean to me? Disability Pride is a celebration of identity – people are telling their own stories loud and proud and in doing so, educating others, empowering other disabled people, and pushing forward disability inclusion and universal/accessible design. It’s incredibly important for the disability community, our allies and wider society.
Ryan Curtis-Johnson.
Ryan (he/him) identifies with the blue section of the flag, which represents mental illness.
I’ve suffered from mental illness for over three years, starting just before the COVID pandemic. I was suffering from anxiety, and this was often a fear of the unknown. The need was that I had to plan for every possible outcome of every situation I was in. The need to know it would be ok. Then a professional suggested I had borderline OCD. The fear of being out of control scared me, it was an absolute fear of everything. It affected my sleep, and switching off was impossible.
The fear I always had was admitting to myself or anyone else that I was struggling. I feared it would be seen as a weakness, and would I be treated differently. The breaking point for me was that I couldn’t find the answer, causing my mood to drop. Things that annoyed me were people telling me I had everything I could want in life – kids, husband, so I couldn’t be sad or struggling. Society expects us to be fine all the time, and saying that we’re not often seems unacceptable.
Pressure with work (not at the Valuable 500) and personal elements finally got too much, and I did something about it. Then COVID hit, and everything heightened. However, I had started my journey to help my mental illness, I was aware, and I found ways to manage it. I took little steps to break down what the triggers were. I needed to find ways to make myself happy and manage my anxiety. But also to remember that it comes in waves. Life is up and down in many ways. Losing my mum had a massive effect on me but in some ways, knowing I was managing my mental illness with counselling has supported me through my grief.
Just because mental illness is not visible doesn’t mean it’s not as relevant as any other disability. I believe that even though mental illness can be perceived as a separate identity from disability. I own my mental illness. I claim it with pride and am not ashamed to say I have it.
To me, Disability Pride means being open about it, educating others on disability, and lastly…owning it!
Stephane Leblois.
Stephane (he/him) identifies with the white section of the flag, which represents invisible and undiagnosed disabilities.
Disability Pride is something I celebrate in every facet of my life. As a person with invisible disabilities married to a partner who is deaf or hard of hearing, disability permeates much of my private life, as it does my professional life. For me, the celebration of our identities is not done through grand gestures or by wearing a certain color on a certain day or week, but rather through the little things you do within your community of fellow disabled people to make people feel welcome and appreciated for who they are.
At the same time, my role as a disability rights advocate is to use what I’ve learned through my professional and personal journeys to inform perspectives and drive changes in behavior, in oneself and in others – both of which are done iteratively and over time. Disability Pride month is an opportunity for the global community to internalize that we all have a civic, moral responsibility – lived experience or not – to seek opportunities to better understand and take active roles in cultivating and celebrating inclusion, during this month and all months.
This member of our team wanted to share what Disability Pride means to them, but would prefer not to be named. They identify with the yellow section, which represents cognitive and intellectual disabilities and the white section, which represents invisible and undiagnosed disabilities.
I was recently diagnosed with endometriosis, a condition where tissue similar to the lining of the womb starts to grow in other places, like the ovaries and fallopian tubes. Symptoms vary between people but the most noticeable symptom for me was stomach and lower back pain during or around my period. And when I say pain, I mean pain! The kind that makes it difficult to do anything at all, even to get out of bed.
I say I’ve been diagnosed with endometriosis because I have, by a gynaecologist. But it’s a notoriously difficult condition to diagnose and the only real way to be certain that you have it is to have an invasive surgery called a laparoscopy, to see whether there are definitely patches of endometriosis tissue.
I’m currently deciding whether or not I want to go through with this, and I guess in part, face up to the fact that I have a condition that could affect my ability to have children someday. In the meantime, I’m exploring other treatments like pain management and hormone therapy.
I’ve lived with Dyslexia all my life and I can honestly say I’m proud of it because it enables me to think differently and has made me a more creative person. But I’m not quite sure how I feel about this diagnosis yet. It’s a difficult subject to discuss with people – firstly because most people have never heard of it, and second because it’s wrapped up in the taboo around periods. I can’t in all honesty say that I feel proud of something that causes me pain, embarrassment and a lot of worry.
But for me, being part of the amazing disability community, and feeling supported during this time, has been really special. Social media has been such a vital tool for me in my journey to learn about endometriosis. I’m so grateful to all the amazing people out there sharing their stories and giving hope to other people going through the same thing.
So this Disability Pride Month, I’m proud to be part of a community full of brilliant, diverse and downright cool people. It’s amazing to know that even if you’re living with a disability that people can’t see, or one that hasn’t been officially diagnosed yet, this community is here for you. And that’s something to be proud of.
This member of our team wanted to share what Disability Pride means to them, but would prefer not to be named. They identify with the white section of the flag, which represents invisible and undiagnosed disabilities, and the yellow section of the flag, which represents cognitive and intellectual disabilities.
Disability Pride month raises complex and conflicting emotions for me, as it does for many people within our community. I have recently found out that I am neurodiverse and have ADHD. It took me a long time to realise that my brain is neurodiverse; in fact it took me almost 40 years.
Historically, the stereotypical picture of ADHD is of young boys being disruptive in a classroom setting. The reality, of course, is that ADHD symptoms often manifest differently and can be masked, hidden and misunderstood for decades (particularly in girls and women).
I am now going through the process of trying to receive an official diagnosis which brings with it a curious mix of feelings.
Excitement
I am excited because I now understand so much more about who I am and why my brain works the way it does! I keep finding out new things about neurodiversity which explain aspects of my character which have always perplexed and confused me.
It has also been exciting to find myself part of a new community. I have met so many people who have ADHD and, like me, have spent most of their lives undiagnosed. There is a great sense of joy to find a new group of people who not only understand and empathise with me, but who help me to accept and understand myself better.
Grief
Alongside the excitement of this new information, there is also grief. I have spent so much of my life fighting against my brain without realising that’s what I was doing.
I am currently grieving the decades of misunderstanding and vicious internalised rejection. Many of the things I believed to be character flaws are actually symptoms of a dopamine deficiency. Had I known this about myself sooner, it could have had a significant impact on many aspects of my life. This has been hard to come to terms with.
Anger
I am angry that I did not know about my neurodiversity sooner. I am angry that a misunderstanding of how my brain works has led to a lifetime of viewing myself with contempt and even mockery.
It is extremely difficult to get a diagnosis as an adult, particularly as a woman. I am currently on a waiting list to get onto a waiting list. There are so few experts in adult ADHD diagnosis and treatment. For this reason, it is a long and arduous process. It has been frustrating to finally understand how my brain works, but not to be able to receive a diagnosis or treatment.
Relief
I cannot properly articulate the relief of realising that I am a neurodiverse person. It feels like a series of lights have been switched on and suddenly I understand who I am and WHY I am! I can stop fighting my brain now and, instead, I can radically accept myself.
So where do these varied and contradictory feelings ‘fit in’ with disability pride? As with many people, I have a complex and ever changing relationship with my own experience of disability.
I am coming to terms with the fact that being proud isn’t all about positive emotions. That is uncomfortable because it does not fit into the natural trope of the word PRIDE. However, my neurodiverse brain allows me to experience these apparent contradictions. I am proud, not in spite of my feelings of excitement, grief and anger, but because of them! I wish every person a very happy Disability Pride Month and look forward to continued openness and pride in our beautiful diversity.
Paying Tribute.
The Black Field on Ann Magill’s Disability Pride flag is designed to represent the disabled people who have lost their lives due to their illness, negligence, suicide, and eugenics. As part of our Disability Pride celebrations, we want to pay tribute to all the disabled people who lost their lives during the COVID-19 pandemic.
COVID-19 had a disproportionate effect on people with disabilities, with some studies estimating that at least 6 out of 10 people who died from the virus were disabled. Sadly, this was too often due to negligence on the part of health-care providers and a lack of special measures to prevent people with disabilities being exposed to the virus. A significant number of disabled people also reported that, due to lockdown, their health care needs were not fully met or that they had treatment cancelled or delayed. The high number of COVID-19 deaths among disabled people ultimately reflects wider failures in how governments worldwide supported the people who were most at risk.
This Disability Pride Month, we remember all those who lost their lives and are unable to celebrate with us, as well as all those who continue to be affected by the pandemic.
