A spoken word poem about coming home in the pandemic, finding physical things more difficult, and how parents, friends, disability and language come into that. It's emotional, it's long, it's where I am now and says some things I've wanted to say for many years.
You can listen to the audio/watch the video, and text is below. The video has subtitles (click to turn them on).
For more about me, see my website or say hello on twitter where I'm @desibility.
Dancing on the stairs
let me tell you an egyptian saying
that describes my life right now:
الرقص على السلم
"dancing on the stairs"
sure, it sounds nice but
this is a proverb that means
you're in an unstable situation, neither up nor down
and maybe what you're doing isn't the best response.
think about it right: stairs are a dodgy place to dance
i guess that's life though -
we don't always choose our dancefloors
and my life - my best 2020 life -
is here, on the stairs of my childhood home
my heart beats fast and my slow dance
is holding on as i grab and lean and lever
to climb: to fall;
in this dance:
to lever lockdown leaded legs
up stairs steepened with time
falling is part of the climb
for the last years
i've mostly come back on
fast joyful summers which lighten me -
if the sun is shining
and you make time move quickly enough
you don't see how much you've lost
"Welcome back to Blighty," a friend's text reads:
"It's terrible, you'll love it."
- and that's my hope
for home, - if you call it that.
it's not just my body
this country's not what it used to be
and neither, i hope, am i.
i read a book about returning
helpfully hurtfully starts by saying:
"now there is no plan b."
which is difficult for me as
my coping strategy for life and work and love...
is being ready to leave.
I'm always adding
to this list of places i've loved
but not enough to stay
so here i am, after 12 years abroad
back to where i started trying to get away
this same bedroom, house, parents
but now i'm in my mid-30s
i don't have a partner or a pension
and this is my plan b, or maybe c
it was always what i was going to do
when things stopped working out
how can i be me in the place
that i became me by getting away from?
"it's harder than going somewhere new"
say some fellow wonderers, like me intimidated
less by the unknown and its possibility
than familiarity and old inadequacy
"are you worried about being put in a box when you go back?"
yes i am thank you very much
and here - if you think i belong here -
i have less control over how you other me
being a foreigner is easier:
it gave everyone an explanation
of why i was asking questions and
why i didn't fit in
here, I don't know if you can see me
or what i've learned
my British friends laugh when I say
that I came back to brexit britain for stability
and that now - I'm learning English
but stability and learning depend on perspective
If the UK could relate to the places i've been
As more than problems to be solved or holiday destinations
We'd see people as people and yeah... we'd start paying reparations
This language and this country are part of a wider world
not separate from it
and of course, my life is also part of that wider injustice
it was more obvious when i was abroad -
and i don't know now how much i will miss
those recognitions i claimed not to like
of expat work and life.
Here, inequality is less apparent in the day-to-day
but the same divisions are still there,
and i'm worried about what happens next in the places i used to live,
so i came back to get the security and freedom a rich democracy gives
and make sure, really sure,
that whatever does happen
at least i'm starting out on the right side of global inequalities.
Where better to do that
than the country that made so many of them?
normally i cry on the plane
the first time i cried after leaving cairo
was at the end of quarantine in blighty
after the shock of the world outside
after getting up the stairs that day
throbbing bedroom tears of
body and mind in difficulty
i want to move out as soon as possible
i want to tell mummy the stairs are horrible
i want to tell her i need my bag i left downstairs
i could just tell my parents
but i can't
all i can do later this evening
is look in the mirror in the bathroom and cry some more
it's awful to be home
my main thought is difficulties on the stairs
but it's not just that -
part of why i cry is relief
of being arrived and free after
five months in my cairo apartment, locked-down
i did not go outside that door -
corona was who knows where,
and my main - anxiety-thought-plan -
was when and how to get back
another part of it
is that as i know from all this travel,
it's not a move until someone's cried.
It's not just the tears: moving does more than rip your heart out:
when you arrive, the intensity of what's in front of you
imposes a new now and
You can't even imagine where you were last week
Who you were last week or what you were becoming.
i was worrying you can't see me for what i am
but it's scarier that i can't see it either
when i feel better the next day
i'm able to break down to my parents
in a meal time mess
of love and logic
cross purposes and care
i wasn't sure if i could tell them because
i was hurting and i didn't know how they'd react
this dinner table dance is emotional and intellectual
stairs are a feeling, an idea, a future
i needed them to see it my way
my way says this is less about my body
and more about how it makes me
worry all day about how my legs are and
whether they'll get me back upstairs
worrying me is a visionary
of already upsetting future emergency
when i might need to get up these same stairs -
if my parents are sick, or maybe one day dying,
and i need to be their son
it turned out that
our love was clearer than our ideas and worries
and it's strange to hear
they wish that they could do more for me
as staying with them
i'm so aware of what they already do, and
I wish that i could do more for them.
the next days
when my mother tells people how we are
she rushes to say the house is "totally unsuitable"
and my father goes out of his way to ask
if some place can install an elevator
i feel a burst of warmth
they're with me, going my way
i think on the stairs
they know i prefer to be left alone
sometimes you don't want someone to see your difficulty
because they'll call it a struggle
and you don't want to say it out loud
because maybe that will make it real
so thru the day i worry in secret
conserving my energy and
calculating if i feel fit
at the end of the day, but not too late
it's easier to just do it
than think about it more
my heart is beating fast before i've set out
the first steps are fine
they need effort, but it's the corners that are hard
so i go up, and just before the landing
with two steps to get there
i pause, and prepare.
on the corner,
using the banister changes to a complicated balance
of grabbing the wooden aid my father made
leaning forward, pulling it into my ribs
and lever my left leg up.
still leaning in, my right follows
and one step done, i get vertical.
the next step is the hardest
and i don't let go and i don't wait to go ahead
grabbing the corner post - and my nerves -
i'm now on a rightwards lean as there's no banister in front
friction keeps me stable altho
at each complicated step i'm calculating the risk-reward of a fall
forwards is fine and maybe it's another way of gaining height
it's falling backwards that brings this
to a stop
rightwards lean, lift left leg up - ok - then right leg too,
my right leg waves unmoored
so push it against the column
and hope it stays not slips as who knows what direction that would be
- and yes, i did think of the mechanics of this moment
when i chose what socks and trousers to wear -
right leg in place, then i use that to push off the column
to standing on the landing
i rest, holding on, panting in victory
a good chance to reflect on where i am
on the stairs - and why not at the same time?
reflect on where i am in life
on the edge of whatever happens now
panting in partial victory -
as there's a second part too, and that last step
has a banister that runs out
and a wooden aid i push into my ribs
and a final locklegged lunge
to, inshallah, standing outside my bedroom
does fear make my legs weak?
sometimes they feel stronger at the top.
and for me these days
these things are even harder in my imagination
than when i do them
This is what a body is
A body's all I told you
A body's connected: in the world and both are changing
It's not just the meat you move - try to move
It's the ground you tread on, the bannisters you use,
The stories you tell, the futures you face.
And... something else we didn't talk about yet.
let's get on to identity business.
i'm just going to talk about disability but keep in mind
that we all have many sides to our identity and
among other things i'm a white british guy with a fancy education
and a strong sense of entitlement to go where i please.
my income: gets me around barriers of inaccessibility.
my class position, my personality and the forms of disability i have
all make it easier for people to act like nothing's happening here
so. identity business is in fact... my business
i work on disability by which i mean...
i work on promoting social inclusion and realization
of the rights of persons with disabilities
to start with, i'll stick with party line:
disability is part of human diversity
and i'm proud of my disabled identity
i do what i do, because of who i am -
not despite it.
i did not overcome disability:
disability gives me a community,
a vocation, a common cause,
and ways to understand the world.
not to mention reasons to travel round it.
you could say i have a mobility problem,
and you're right: i fly too much.
it appears a contradiction and someone did say
"you've come all the way from england, so you can go up those stairs."
to that person,
and to whatever it is in all of us that is still making assumptions,
i can only say that modern travel is... motorized
and that my difficulties standing up
have given me more time
to talk about the places i've been
and book my next tickets online
my work has prepared me for
this year or in five years or whenever it is
that i stop going upstairs in my life
and for whatever other limitations are thrust upon me - or you...
i have wonderful brothers and sisters we can look to
a full life can be lived in many more ways than we might think.
my feelings don't always fit with my ideals
this poem is not in-line with my professional opinions.
my experience is not a category.
and empowerment is not a cure.
sometimes the identity view is too powerful,
the way we're talking is too simple
these labels are lenses that flatten as much as they reveal...
in our urgent need to to change narratives
we're presenting partial solutions as the whole truth
i've been aware for a while
that the ways i know about disability
don't necessarily make me any more prepared for the process of change
the only theory i have about acquiring a new disability
is that i'm going to find it as hard as anyone else does.
part of that is what we call, from our heights, "ableist attitudes"
it's easy to talk about "self-stigma" or "denial"
I hope I don't use these arrogant words again
as they're inside me too.
for example: the feeling that losing my physical ability will limit my life
is a negative stereotype - but also made my life richer
as it was part of what propelled me in my years flying around:
i felt i needed to travel while i was still able
let's get into one of my professional opinions -
something called, "the social model of disability":
it basically says disability isn't in the person,
but in the social situation.
We differentiate between the individual's impairments
and what happens when these interact with attitudes and environments
"disability" is that interaction
this idea has changed the world and my life too.
it's a powerful concept - and it can still change so much more
but let's not get carried away by the power of our theory
I hope our certainties do not shine so brightly
That I can't see my or other people's truths
using it so easily in so many different places
also shows how much it's missing
if you have a model you can apply everywhere
where do you draw the line?
let me tell you where i draw mine
my job is about changing policies and systems
and i will use this idea there
my life has barriers
and this helps me understand them
but i don't accept the limitation
of always seeing myself in this definition
it might be at the heart of what i do
but it's not at the heart of who i am.
even without getting into all the other parts of me
this model doesn't explain my experience of disability
we say the social model
as if there would only be one.
and it's based on barriers and limitations
as if there weren't other types of interaction too.
and as for what it does explain
the idea that there is a fixed nature of "impairment"
or a clear separation with society
is not a model that's very "social":
they define each other, and
that's one of the things i'm trying to step out of.
for me, there is no clear separation between
my impairments, if we must call them that
and attitudes and environment.
the reason this poem starts in the uk
is that in lockdown in cairo
my body - and "my impairments" - were different:
i was keeping fit and in many ways thriving
a different environment made my body different too.
the reason I started with an egyptian saying
is that there're many ways we can see our bodies differently
and they also make something new
like i said, a body is not just flesh and bones
my physicality is the moment on the stairs
and that moment with my parents
this whole poem
is part of it too.
would coming in waving the flag of disability
have made any of it more true?
would it have helped show
how these things can relate to you?
what is it that our labels do?
There's also a starker difference between
my body and my career - my career is going well
i get respect in my work
for who i am and what i do
but even though it's happening at the same time to the same person
and even though i work in a field you'd think it was related
in that celebration of professional me
there's little space for recognition
of my body's challenges and victories.
Or... you can see the difference positively
in the sadness and frustration of this pandemic
we find new things
i found a new relationship with work
and that's been wonderful for me
talking about work going well
it's appropriate to say
that i'm blessed and grateful
i do know how lucky I am to have had so much to come back to
i do know how lucky it is to have health and income
part of my work is recording what's going wrong...
In the pandemic in England
60% of those that died from covid - 60% - were disabled people.
over the years i've learned from the worst things I've witnessed
not to take this i'm blessed thing too far
yes i do journal about my gratefulness but
other people's suffering does not lighten our load
and if we look in that direction we can overlook ourselves.
gratitude is not a question of comparison
and neither is "how are you?"
"How are you?"... is a hard question
when being in difficulty can be so defining
and there's so much that we don't know.
my crisis separates me from what's outside
like when you travel, it puts you at the centre of the story
and so did this way i'm telling you about my arrival.
next to me my parents are getting older
theirs is not my story to tell,
but i hope i'll be part of their journey
as they go through these changes.
not to mention every story we see and friend in difficulty,
continued tests of our capacity for pandemic empathy
we're each finding limits, but all of our experiences are so far apart
and we don't have the hugs or rituals we used to get closer.
And as well as all that
my crisis separates me from myself.
these uncomfortable moments
use my energy, fill my feelings and my mind
leaving less room for other things.
i blame myself for how my body has changed
the harder it is, the more I feel i'm lazy.
was it my fault, for not doing enough?
some months after getting back,
i found my own place - no stairs.
Now my dance... is how much i can still walk -
in past years i could get around a block or two or more
slowly, but with some confidence
when i came out of lockdown i realised
i didn't know if i could get to the end of the road
i'm practicing tentative steps out into the carpark
or almost to the carpark
i thought it would be hard and slowly get better
some days it does
some days i think i can get more back
and maybe 10 - 20 - 50% of this difficulty is the cold weather
some days its worse
and the steps in that moment are hard
for what they are and what they tell me
about my unfolding future
I can walk fine inside, for now -
but will I be able to walk outside again?
And what else will I lose?
Apart from a little nightmare last night,
When I dream, I can walk like I used to,
But when I'm awake it's harder to forget.
Even if I look back on pictures,
i don't just notice how we used to sit together so recklessly,
i think how carelessly i could walk to where i was.
i'm seeing good memories in the painful light of what i've lost
and whether i'll be able do that again
the lockdown and the pandemic
changed everything -
i feel that i can't live like i used to.
that my nomadic life has ended.
The world seems more dangerous
and our horizons smaller.
it's only with time
i can see it more in context
We were already in a fragile and chaotic world
and i'd done way more than my fair share of travel.
Before the crisis, I'd spent time thinking about
how i could live here if i did come back,
which meant I was lucky to actually have a plan b.
And in context I also see more clearly
how my body has changed.
I remember walking had been harder before the lockdown too.
As for missing my teenage body, sure
but i didn't like it any better then:
my teenage life and growth spurt
were also painful transitions.
My body outgrew its mobility
and socially-awkward me struggled to ask for help
there's things that i've learned to ask for
but asking for some new type of thing is still pretty hard.
to say to a friend or my parents that...
"i didn't used to but now
i could really use someone to lean on
as i try to walk outside my house"
absolutely. definitely. not.
struggling with this alone
is clearly a much better option
i am better at sharing than i used to be though
that's part of what i meant when i said i'm learning english
- or any other language -
it's about finding new ways of using words
to reach people or to see the world.
It's about finding new ways of being you.
for many years i've wanted to bring together
these ways i know things
through my body, place, work, disability and languages
this lockdown moment and its difficulties...
plus time, overthinking
close friends, coaching, therapy and workshops on zoom...
got me here: to be able to share like this
bringing together these contradictions and challenges
rather than being cynical, silo'd, or silent about their confusions.
i'm still surprised
that people find what i'm sharing here relatable
as it's based on things that are so mine,
that scared me and made me feel alone.
this was a big step up for me.
to guide us in today's closing dance,
let me tell you about another saying
this one's in Bangla:
নাচতে না জানলে উঠান বাঁকা
if you don't know how to dance
you blame the broken stage
being able to share doesn't change the dancefloor:
the facts about what's broken stay the same.
but finding my voice is liberating
it definitely changes the music
and maybe it's a way to a different dance
that other people are part of too.
i'm lucky to have good friends
one of them messaged me with words
that i'll hug to my chest for a long time to come
he said that he didn't know what i was going thru
but that my courage, taste for adventure, patience,
enjoyment of the process as much as the destination
makes him believe that
even if they look different from the last ones
many days of gallivanting are still ahead for me
i thanked him for the gift he gives
of seeing in me what i can't see about myself.
it's not just my walking, these days
my old thinking will only get me so far:
it's good to have people to lean on.
he helped me see that
feelings are not a full stop.
I know that we can just install a stairlift.
i know that walking and climbing stairs are overrated.
there are many ways to live the life i want without them.
It's hard for me to hope, but it's easy to be upbeat on whatsapp
so i replied to my friend, well,
whatever happens lots of adventures ahead for both of us!
and maybe that's true - although i'll send this to him to see
if he has another word for "enjoying" the process...
sometimes there isn't an easy way up or down
each step is difficult even if you've done it many times before
we look at what ifs about
where we are, what life was, what we lost
and what comes next
but what greater adventure is there than saying:
i don't know what happens now, but
here, on the stairs,
all you can do:
Thank you for being part of mine.
Thanks you for being here, reading or listening.
Huge shout-out to Write2Speak workshops held at Lakeside Theatre in 2020-2021. As well as amazing hosts Tyler and Yossi, our group was incredibly supportive, and I couldn't have written this without them.
I'm very grateful to early audiences, including Raghda, Anne, Eliana, Mary and my parents. Thanks and love to my parents for all of this and so much more.
I won't name friends specifically. Friendship, conversation, figuring this all out together, it's what shaped my ideas and got me here. And in this period, I had help from a coach and a therapist too, thanks to both of them :)
Much love and dance on x