“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” -Martina Navratilova
On this International Day Of People With Disability I want to be considered in the way our world is designed -Accessibility is a necessity. Societal perception of physical differences and people with physical differences disables me more than my body does
Take Pain Meds” – a poem by Nisha Varghese [I wrote this for people to understand what it’s like for people who live with chronic pain]
“Take pain meds,” they say as I lay in bed my body aching and my heart hurting
“Take laxatives,” they say as I clutch my stomach in discomfort
Keep quiet and take anything so we don’t have to listen to your pain for which we have no permanent cure
“Maybe I should take pain meds but if I start will I ever stop? It’s not like I’m ever not in pain,” she says to herself silently
Do I really want my bloodstream to be a pharmacy?
This body may be my enemy sometimes but it is the only home I will have in this life
Still, they say take pain meds
Is there a pain med for the hurt you feel when you’re treated like a condition instead of a whole human being?
“Take pain meds,” they will always say because unless they live in a body like mine they will never understand the pain of being dismissed and unheard
Knowledge speaks but wisdom listens
PLEASE LISTEN TO ME EVEN WHEN YOU CANNOT FIX ME!
“The present moment is all you ever have.” – Eckhart Tolle
Yesterday after many years of procrastination I finally published my children’s book entitled Different Is COOL which is about self-acceptance and service to others and I hope after reading it everybody will ask themselves what can I do to make a difference in my community and in the world at large.
To buy Different Is COOL please visit https://www.amazon.com/dp/B08LLFNHL2/ref=cm_sw_r_tw_dp_x_OtCKFb52E50FD
“Do not let what you cannot do interfere with what you can do.” -John Wooden
Today is World Cerebral Palsy Day and although it is not the definition of me it is a part of me that i have accepted.
CEREBRAL PALSY is the most common motor disability in childhood. ‘Cerebral’ means having to do with the brain. ‘Palsy’ means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. Cerebral Palsy looks different on everybody – in some cases you could never tell that people even have it while in others it’s obvious because mobility aides are required and in some cases there is also speech impediment and intellectual disability (Please note: speech impediment associated with Cerebral Palsy does not always equate to intellectual disability)
PS. If you’re wondering how to treat someone with Cerebral Palsy – just treat us like people.
Until you’ve seen things through people’s eyes and heard things through their ears you’ll never understand – that’s what I’ve realized
Yesterday after realizing that until you’ve seen things through people’s eyes and heard things through their ears you’ll never understand I wrote the following Facebook post:
Through my eyes and ears
A stare from an adult is a reminder that to some of the world i’m still a circus-freak (i don’t see myself that way but some don’t agree)
“I’ll pray for you” = “You’re broken and need fixing”
Stairs (without an elevator/ramp as an alternative ) is my worst nightmare and greatest barrier to entry everywhere
My wheelchair = my way of getting from A to B it is NOT THE DEFINITION OF ME
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My greatest disability will never be Cerebral Palsy but rather the world’s exclusionary and unaccommodating nature) #DifferentIsCOOL
Some people want to know what’s going on in your life so they can judge not help– that’s what I’ve realized
Today I was somewhere and the women there were very curious when my mother was returning and how we were coping I tried to be as polite as possible but the undertone of judgement with which the questions were asked really irritated me especially since nobody asked anything of my father (patriarchy is real). I don’t expect my mother to be tied to me every day of her life but apparently the rest of the world does I will fight for my mom’s right to have a life outside of me she must live, truly be happy and in so doing be an example to all us kids
Life is all about being able to adapt – that’s what I’ve realized
It’s 12: 58 PM on day 3192 since I started blogging and I managed to pray, read Bible, spend time outside and work on my 28 For 28 Campaign benefiting charity:water – we’ve now raised $3 188 of $28 000 with 105 days to go
The first morning without my parents almost turned into a disaster when we thought the housekeeper wasn’t showing up (my sister is a doctor and on-call today which means she won’t be home till tomorrow afternoon – our housekeeper, Amanda, will stay the night to help me) when I thought Amanda wasn’t showing up my first thought oh my god who’s going to take me to pee – my brother is here and can do most things but I couldn’t ask him to take me to the bathroom especially not while I’m on my cycle – ) the things I have to worry about are non-issues for most people when you need to go to the bathroom I bet you just get up and go without worrying that your need to go to the bathroom might be interrupting what someone else is doing if I could walk for a day that’s what I would do – go to the bathroom all by myself (I’m not even kidding that’s the one thing I ache to do I just want to go to the bathroom without bothering anyone)
The hardness of life is what make it so beautiful – that’s what I’ve realized
It’s 4: 18 PM on day 3174 since I started blogging and I managed to pray, read Bible, spend time outside and work on my 28 For 28 Campaign benefiting charity:water – we’ve now raised $2 822 of $28 000 with 32 days to go
Today as I was screaming for our housekeeper to take me to pee (she was outside) I felt again the hardness of my own life -when going to the bathroom becomes an event you know things are atypical – I’ve been told many times we can put you in a diaper, maybe pee in a bedpan, we can put you on pills to stop your period and while I do appreciate the suggestions and know they are meant to help me I won’t wear a diaper (I know when I need to go and am capable of telling people so), I won’t use a bedpan and I most certainly will not take pills to stop my period…I will fight to the death to keep my dignity and autonomy over my body
“Do not pray for an easy life, pray for the strength to endure a difficult one”― Bruce Lee
It’s 4: 07 PM on day 2991 of my journey towards independence and I managed to pray, read a Bible verse and do some work
Today I was left with our temporary housekeeper since our permanent one is sick and so there I was in the bathroom for 10 minutes wondering should I or shouldn’t I ask her to help me wipe after I peed and in the end I just couldn’t and so as soon as mom returns from work mom I need to change I’m wet to which she of course asks why didn’t you ask her to wipe you after you peed – we pay her to help you to which I say mom it’s embarrassing [imagine being 27 and needing a virtual stranger to help you wipe] the hardest part about my life is that even those who love me more than life will never really understand I will always have to explain – it will always be a fight to get through the day and to live a meaningful life in the process. I am thankful every day that I have help but I HATE that i need help I feel like my pride is dwindling every single day
Even when life’s not going your way be grateful that you still have life and a chance to get it right– that’s my message to the world
It’s 11: 44 AM on day 2983 of my journey towards independence and I managed to pray read a Bible verse, and do some work
Today I’m river of tears my poor brother keeps asking why I am crying I can’t tell him that I look outside and I’m envious of the birds because they are freer than I’ll ever be, I can’t tell him that although I’m grateful for my healthy body I feel imprisoned in it, I can’t tell him it sucks that people my age are married with kids while I still need help wiping my rear-end, I can’t tell him I’m never alone but I’m always lonely because nobody I know shares my experience or my uncertain future…I can’t tell him any of that so I ignore his question and continue to cry silently – sometimes I wish I wasn’t so aware OF EVERYTHING it almost seems cruel to make someone so capable of mind and heart and yet so challenged physically.