[IMAGE DESCRIPTION: Black and white image of Sulaiman (who is wearing a sleeveless vest and he has a tattoo of a wave on his right shoulder as he loves the ocean). You see his spine twisted by severe Scoliosis, and he is lying on his left side in bed sleeping at night with a ventilator mask over his nose connected to ventilator pipes that he loves as it helps regulate his nightly breathing.]
FROM 21 JUNE 2019.
“I have a duty to speak the truth as I see it and share not just my triumphs, not just the things that felt good, but the pain, the intense, often unmitigated pain. It is important to share how I know survival is survival and not just a walk through the rain.” — Audre Lorde
Currently listening on loop to “Mantra” (featuring Frida Touray) by Jordan Rakei from his newly released, magical new album “Origin” and I felt like writing, so I write. Following me highlighting my physical condition after my recent hospital appointment looking at my physical health (all good), I’m posting about something I don’t talk much about (and that’s not spoken about much in the South Asian and disabled communities): Mental Health and therapy.
In all honesty (despite appearances or what you think of me), I am a complete introvert and struggle daily with myself in every way with severe anxiety, fear, and depression etc., but I just keep going. Only a handful of dearests know this, but I’m deciding to share my truth to help those of you struggling visibly or invisibly. I want you to know that you’re alright and doing great where you and how you are. I see you, and I’m always here for you as well. Take care of you and here’s to our good health (and holistic wellbeing) because tomorrow we slay! You deserve to be yourself in every way. I try to be bold, be wild and be fearless about that. Daringly, forwards.
And after a six-month wait, I’m starting up my therapy sessions via the NHS (I Love The NHS!) again after a break this afternoon. Being South Asian and having a physical disability, mental health hygiene and therapy has never been looked at for my entire life, and it’s only as an adult I am pushing for it as I need it since I recognise how vital it is. And that’s okay.
I need to start better regular mental health hygiene and therapy because I’m dealing with so many issues (in no particular order) including:
Trauma.
Past and present trauma.
Appearances.
Body-image confidence (or lack their of).
Body.
A body that’s wasting by Muscular Dystrophy and twisted by severe Scoliosis, and all that it involves.
Chronic Pain.
Dealing with daily Chronic Pain because of it (just because you see me always smiling doesn’t mean this pain isn’t deep and heavy).
Mind.
An active mind that’s trapped in this body, and having so much energy (and wanting to do more and go to more places around the world) but getting extremely fatigued the older I get.
Masculinity and Feminism.
Trying to figure out where I fit into Masculinity and what it means to be a man with this body who doesn’t meet accepted Masculinity paradigms such as having “strength”, as well as how this fits into me being an active intersectional feminist-in-progress when I don’t want to be a part of any form of toxicity (whether masculine nor feminine).
Sexuality.
Trying to understand who I am as a sexual being as disabled people often are never seen as such, and society only seems to see us as “Inspiration Porn” and “Disabled people must be able to express our sexual needs.”
Love and Relationships.
Struggling with whether I will ever be in a relationship / find love or be loved etc., knowing I’ve got so much love to give yet I face an uphill struggle with many issues including ableism (and internalised ableism) and forced intimacy. It is especially a greater struggle here in the UK where just 1 in 2 non-disabled people have said hello to a disabled person, and only 1 in 20 have ever dated a disabled person. When most peers were forming these relationships and getting to understand themselves in their youth, I was fighting to literally survive and trying not to die, so didn’t have the capacity for anything else.
Disabled Entrepreneurship.
If I’ll succeed as a disabled, creative, socially-conscious entrepreneur when disabled people in the UK are more likely to be unemployed than our non-disabled peers.
Financial Independence.
If I’ll become financially independent and live the life I need (and giving me the ability to amplify disabled creatives and take the Social Model of Disability to the next level) when here in the UK disabled people are more than twice as likely to be unemployed as non-disabled people and life costs you £583 more on average a month if you’re disabled. Moreover, another uphill struggle I’m fighting is that a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled.
Love/Hate Relationship with Technology.
Struggling to truly “disconnect” from tech when I am always “connected” to tech out of necessity; even if I’m not connected to my mobile phone or computer, I have to be “connected” to a loud air mattress when I lay down, a ventilator (and other equipment etc.) every night, and a power wheelchair to be mobile. So how do I create headspace I need?
Local Authority.
Ongoing frustrations with my local authority who often want to cut my care package despite needing it to thrive and who recently suggested (again) I go into a care home for respite care when I need a bit more funding so could travel away with carers. Obviously, I can’t go anywhere without them but can’t afford to — and shouldn’t have to — pay their costs too). And it is not right my local authority want me to get permission every time I want to travel anywhere to possibly approve funding, but that’s not guaranteed.
Carers.
Ongoing frustrations (apart from two people who are incredible and support me long-term to facilitate my life) with my carers who often don’t get me and are oblivious to my needs. Long story.
Isolation.
Feeling alone and feeling like I don’t fit in any community anywhere, and if my Faith community (people not the Faith) will ever be inclusive of me.
Autonomy.
Despite being able to express my own opinions and thoughts since I have full mental faculties (and can fully communicate myself), anger at myself knowing I’ll never be able to do physical things myself (especially personal care). Anger at myself knowing I’ll never be able to go anywhere I want when I want (or do things spontaneously). Anger at myself knowing I’ll never be able to give anyone a hug physically myself whenever I want.
And more.
There are lots of the issues I’m dealing with daily, but too fatigued to write much more.
That all said, as a disabled, active intersectional feminist-in-progress, creative, socially conscious entrepreneur, South Asian man, I am glad I’m going back into therapy since it is important for my holistic wellbeing: it is part of my PHYSICAL, MENTAL, EMOTIONAL, PSYCHOLOGICAL, SOCIAL, AND SPIRITUAL maintenance. So, if you need therapy or think you do, go do it! Don’t worry about what anyone says and never feel shame or guilt you’re doing it, as your holistic wellbeing is valuable and you deserve it.
Also, I wasn’t sure if I should post this photo of me from last night, but again, I’m deciding to share my truth further, raw and authentic. YES, this is me and how my body is wasted by Muscular Dystrophy and twisted by severe Scoliosis with the ventilator I use every night (to lower the Carbon Dioxide in my body and increase my blood saturation levels, and make sure I don’t stop breathing) that I love and I’m even more thankful to the NHS for providing. I’m still growing to trust myself, be kind to myself, and love myself wholeheartedly. I’m not fully there yet, but every day I’m getting there. However, I am forever thankful for a life full of blessings. And I’ll choose myself, ALWAYS: I am enough because I said so and that is not up for debate.
So, I’ll be Disabled AF (with all my sunshine, good vibes, positive energy, melanin magic, sequins, and love) because This Body Is Worthy, and I’ll “be fierce” as Nyle DiMarco says because, we, Disabled People Are Hot.
I may be vulnerable in this post as well, but I am NOT vulnerable.
As Brené Brown best says: “Vulnerability is our most accurate measurement of courage.”
ONWARDS and UPWARDS.
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Listening to “Mantra” by Jordan Rakei