Now Reading: An Interview With Poet, Writer and Musician JD Weaver: A Disability Rights Activist


An Interview With Poet, Writer and Musician JD Weaver: A Disability Rights Activist

August 8, 201720 min read

JD Weaver is a 21-year-old writer, musician, and activist from the United Kingdom who speaks volumes on disability awareness and social justice for all. JD frequently curates his Instagram feed with creative content that has deeper meaning underneath the surface. He will soon be traveling the world while educating others through art! I had the pleasure of talking with him about current political issues, the United Kingdom in general, and most importantly, himself:

Hi JD! Please tell Affinity Magazine readers a little about yourself.

Hey! My name is JD Weaver, or the much less cool Jason Daniel Weaver. I don’t feel any affiliation with where I am from, so I will simply say I am from the UK.

I am 21 and ever since I was born (although I was diagnosed in 2005), I have been dealing with (extremely annoying to spell) Duchenne Muscular Dystrophy. While I am no doctor or medical professional, DMD is a life-limiting, neuro-muscular condition that leads to the eventual degeneration of muscle tissue, with the worst affected areas often being the heart and muscles below the abdomen.

For as long as I can remember, I have always questioned what I have seen and have always felt castigated in some way. But with time, I became the person you see today.

I come from a town that has a mentality of regression, a mentality of “we liked it how it was and we don’t have the urge to change.” Sadly, the “good ol’ days” for some were when people with disabilities were in institutions, racism came freshly served with every breakfast and when the most diversity someone saw was an individual from the town adjacent.

As long as I can remember, I have battled to even claim my existence and have tried to push back against a deluge of ignorance, indoctrinated ideologies, and implicit bigotry.

I think, often, that can be used to describe many areas of the UK. People are quick to claim that it is a progressive nation because the problems marginalized communities face aren’t explicit and maybe not as publicized as they are in bigger nations. However, the reality is that the UK has had a few hundred years to become so chameleonic with certain mistreatment and oppression (by that I mean they blend so well many do not regard their existence).

I often use an analogy in my work, which is, that the UK is like an old embittered man at the end of the road shouting insults at everyone who travels past. The nations that broke away from our abhorrent empire, sometimes, were like young impressionable relatives who were so used to seeing that colonialist, elitist and discriminatory behaviour, that they continued it rather than rebelled against it.

There is very little dialogue about the UK, because the often conservative ruling classes want to paint a fallacious image of this island being a flag waver of freedom.

It is an industry built on slavery, stealing resources and the murder of hundreds of millions of individuals, a system that promoted the sterilization and incarceration of people with disabilities and a system where generations upon generations of wealthy individuals have inherited their power. That is the UK I see.

I stand as an ally alongside the communities that have been discriminated against and are still treated as guests in this modern world. I had to act or use whatever tools I had to challenge the damage and pain brought to so many individuals on this planet.

Without going into too much detail, I see visions every night of my ancestors with disabilities who fell victim to the machine, I see them standing at the end of my bed and until I can give them the world they should have had, I think those spirits will never be free. That is the same for every group that has been hurt, how dare I rest when they lost their lives and freedom and when there is so much still left to be done. Progress isn’t something we tell ourselves we have reached. Until the day when every voice can ring in joyous harmony together, my job must continue.

You don’t shy away from mentioning your disabilities. Do they ever limit your daily life?

That’s absolutely right. I believe being honest about my disability is a sign of defiance against society, which often stigmatizes disability and prevents any dialogue from going on that advances our movements. More importantly, I believe in honesty and integrity and even if it may be uncomfortable for some to read, I believe I would be doing my global community a disservice if I was not open about my health.

For, me my DMD is often a raging machine that makes me feel lethargic, isolated and disillusioned. While in no way am I trying to paint myself as the worst suffering victim in the world, it is often very depleting dealing with a neuromuscular condition. Some days I feel marinated in determination, as much as is possible, and I transfer into my wheelchair from my bed, pick up my laptop and continue to do what I always do.

Other days I reel coiled up in my bed, a body so numb I can’t even concentrate on any thought, ensnared in a trap of my own melancholy. In all honesty, the most tempestuous of limitations I feel is in a more socio-economic and political sense, than a physical one.

I am no leader or representative; I am but a conduit for the experiences that I have.

That being said, I believe I am similar to many people with disabilities, especially in nations where capitalism is in the hands of a select few (often white, male and able-bodied). Unemployment, infrastructure, education are but some facets of modern life wherein I find my biggest struggles. People treat disability as a burden, as an economic cost and maybe are indifferent to the struggle of people with disabilities altogether, to the point that we are marginalized out of apathy.

I find it tiring looking for chances to improve my living conditions and at every hurdle I am either denied or get the most minutiae level of support. I often find the financial and social implications of exclusive capitalism (capitalism for the rich echelons of society) create a hylicistic (the philosophy that everything exists solely because of its interaction with the material world) set-up that often pushes aside empathy, consciousness, and compassion.

I struggle in the world.

What would you like readers to know about having disabilities?

Ableism (anti-disability discrimination) exists in our world. It exists in manifestations that some can struggle to identify and therefore, we, as a society, must try and give those with disabilities with a platform because, quite frankly, people with disabilities have been silenced in a lot of ways.

In my first answer, I covered a lot so I will leave but a few notes:

  • Strength is not measured by physical aesthetics. The inner, spiritual fortitude it takes any marginalized individual to wake up and endure a constant battle, is the signifier of that. The content of our characters should not be reduced to ‘physically’ and ‘mentally.’
  • It isn’t for an able-bodied person to police what terms are acceptable to use regarding disability and even if terms do not individually offend you, does not change the history and etymology of words that were developed at a time when the most heinous of examples of mistreatment towards individuals with disability occurred.
  • Ableism doesn’t have to be lexicon-based. It doesn’t even have to be in big actions, even a small stare can imply certain distaste for disability. While in no way am I trying to condemn people (as I am no way near the epitome of perfection), a large percentage of people may have a certain, pejorative aversion towards disability because so much of what we see around us is ableist. Whether that is in media, in a theological sense, or an ideological sense, often we have unconsciously been fed misleading preconceptions.
  • As long as we see an effort to understand, to create dialogue and place us on platforms to broadcast our grievances, then we can work together. By opening your minds, you are sparking a revolution.
  • Patriarchal societies have helped enforce anti-disability sentiment, as it perpetuates the idea that masculinity is measured by physical strength. On many occasions, I have been attacked by able-bodied men, with some claiming “it’s because you are weak” as a reason for their violence.
  • People with disabilities aren’t automatically asexual despite what the media likes to tell you. They certainly can be, but their sexuality isn’t related to their disabled-ness.

You frequently publish your writing on your Instagram. When and why did you get into writing?

I have been inspired to write all of my life, but I started using social media to promote what I wrote only 4 years ago. Creativity and the expression of the human condition have always been important to me, as I have been marginalized for much of my existence, to a state of solitude. Often my visions and writing were all that kept me going. All of my poems are like particles of my soul.

Where do you find inspiration for your writing?

I get asked this regularly and my answer always remains the same. I don’t particularly know what inspires me because when I write it feels like an out of body experience.

A few months back, it must have been about 3am, I found myself groggy and devoid of any energy, yet something sparked. A catalyst I was unaware of caused this genesis of creativity. Within 4 hours, I had written 100 poems. It wasn’t until the next day, that I looked in my poetry folder and saw just how much content I had managed to produce. I am not one who believes in quantity over quality, but it was just amazing to see how much creativity my spirit held.

I may not have been totally truthful when I said, “I don’t know.” For the most part, I think simply my soul writes for me, basing verses on the experiences my and many communities face in this contemporary context.

However, I want to take this time to dedicate my whole existence, let alone my work, to my indigenous/First Nations allies. I found myself a few months back questioning my mere presence on this planet, thinking to myself, “will I ever be accepted?” I was on the cusp of possible detrimental actions towards myself, just simply because I had grown so tired of constantly battling for my life. Then I met a really great, inspiring woman called Josie Valadez Fraire, who is a wise, powerful and compassionate figure within the indigenous community who not only fights against injustice towards her community but also stands as an ally to so many movements in many communities.

She is a true definition of a warrior. Someone who not only has to deal with the inequalities indigenous women face in the women’s rights movement but also battles against continuous colonialist and Eurocentric ideologies. Yet every day she continues to rise, fight through many barriers and radiates empathy and compassion to those who need it most.

Many messages and conversations later, she continued to encourage me to write and continue to use what tools I had to advocate for the rights of people with disabilities. As a result of her mentoring and inspiring words, she helped me grow my productivity and really the reason why I am here speaking to you possibly is down to her encouragement.

What is even more amazing is that since becoming allies with her, fellow water protectors and indigenous activists have become huge allies and have become the family I have always needed. I finally feel a part of something and I have so many beautiful brothers and sisters who are sacred to me.

If anyone ever says they have no power to change the world, please look at Josie as an example. If you can bring positive change to one individual, you can inspire many more. Not only have I been taught what really matters in life, but more importantly they put me on a path of self-healing. Finally, I can say I am starting to believe in my capabilities and that I can find happiness, even if I face such huge barriers. Intersectionality is of high importance to me as a result of my family overseas fighting for change.

Does your writing help you personally as an outlet for emotions?

It certainly is a medium for me to create word murals of the emotions that have been rattling around my cavernous mind. Most importantly, it gives my soul a chance to emit the repressed feelings it has, that even my mind can’t sometimes utter.

Does it help me? I don’t really know. For me, it is never about helping myself. It is about promoting creativity and hopefully inspiring people with disabilities to not feel voiceless and to not feel ashamed to share their experiences with the world.

It’s all about opening the dialogue and encouraging people to dive into the creative wells all of us harbour. I hope when the sands of time wash over my legacy, that my work can continue to exist after I am long gone, and be of use to future generations who may be dealing with the same issues I did.

You recently received news that you will be able to travel to the United States. How does this make you feel? Why do you want to travel to America?

Firstly, I am really excited to start a new adventure and to know I won’t be returning in any sense to the place I live now is truly thrilling. While it isn’t a permanent move, as I am only going to California for 2 months, I am going to be travelling around (if I can arrange it) North and South America taking my writing and music and trying to make allies along the way. The long-term dream, despite not having a résumé, is to eventually find work to allow me to settle in Southern California alongside creative friends and allies.

I simply want to travel because most of my allies and friends are based in the US. In my own life, I have become accustomed to mistreatment in an economic and political sense, but I just want to have the moral support of allies. I don’t know how many years I have left in the tank and I want to live out my life with a close group of friends around me.

Any final thoughts you want to share?

Peace and blessings to all of you; you are all powerful, inspiring and creative individuals who can change the world. I hope together we can create a world that is beautiful for all who inhabit it.

Answers have been slightly edited.

Check out JD’s Instagram, Soundcloud, Twitter, and blog.

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Remy Fisher

Remy Fisher, a 16-going-on-17-year-old girl who lives in rural Northeast Indiana. Currently the Editor-in-Chief of her high school's newspaper and yearbook, she plans on studying journalism in the near future and wishes to spend the rest of her existence writing and documenting. An emotional Pisces and David Bowie devotee, Remy loves talking politics and anything relating to feminism as well as inspiring and educating her peers through the power of writing.