The following poem is by a friend of mine, Imran Sabir, of Glasgow, Scotland. He shared it with me during my recent visit there. I am sure you will be moved by it as I was. I will let him tell his own story.
I am 31 years of age. I have multiple disabilities caused by a rare genetic condition. To my knowledge there are only five individuals with this condition in the UK. Records show that I am the eldest of these and the most severely affected. The condition is Asian in origin as all affected people all have roots in the Punjab area of the subcontinent.
The condition affects many essential systems of my body causing blindness, respiratory difficulties and speech problems. I have no useful vision; have a tracheotomy tube inserted into my throat to aid breathing and use a special device to amplify my voice. When I do manage to go out I need to use a wheelchair as I am not able to walk more than a short distance without getting extremely breathless.
The condition is extremely restrictive causing me to be housebound for most of the time. I require constant care and assistance with many tasks. My family have given me much invaluable support and assistance and I would not be where I am today without their contribution and involvement in my life.
I have not allowed my impairments to restrict me as far as is possible. I am studying psychology with the Open University which allows me to study from home. I live an active family and community life being involved in a couple of charitable organisations.
The computer is essentially a part of me and has enabled me to do many tasks that I would not otherwise be able to do. Email allows me to communicate easily with friends, family and colleagues. The internet is a source of news and information, which I use to stay in touch with the world and pursue my various interests. Scanning software allows me to read books and modern advancements are improving things slowly and enhancing accessibility.
The poem below is not autobiographical but touches on many of my experiences and observations. During my childhood and adult life I have had dealings with many organisations—, public, charitable and community based. Thus I have faced the stigmatisation, negative attitudes and lack of awareness first hand. Many of the issues I have encountered in my life have given me a deep understanding of many underlying issues. The challenges have made me the person I am today. Many may call me an activist but I just see my work as benefiting others with my skills and experiences. My work involves engaging with many of the issues I have written about in my poem and I strive for when there will no longer be such issues and there is true unity and equality in the society.
A Disabled Society
Born eighteen years ago
To a Scot and a Pakistani,
First cousins vowing to be true,
Joined in holy matrimony.
His coming having no portent—
All being well in his infancy.
Only a couple of years later
Realising his pathology.
Parents seeking treatment near and far.
Yet finding its incurability.
Only then becoming distraught
At life’s apparent duplicity,
Ending joyous expectations
Seeing his growing dependency.
Hearts shredded asunder
At his decay and atrophy.
The father withdrawing into work,
Disappointed and angry.
Unable to face the truth.
Hiding away from reality.
Knowing no English or sources of help,
Having no coping or caring strategy,
The mother laboured on,
Through love and maternal duty.
Mother and child unsupported
By friends or family.
Some comment on their special ness
And their chance to gain piety,
Others whispered at a hidden truth
At some long passed infidelity.
The supposed sins of the father
Punished by the mighty deity.
Not accepting a disabled child,
Or any responsibility.
Leaving love and self-respect
Guided not by rationality
He left wife and son to start afresh
To prove his masculinity.
Mother and child living off the state,
So close to poverty.
Seeking assistance for her child—
From any statutory body.
Communicating without English
Only leading to ambiguity.
Their impersonal services
Just Promoting conformity—
At school and home
Facing true marginality,
Colour and creed making him distinct
From the white majority.
Situation separating him
From the disabled minority.
Impairments causing rejection
From his own ethnic community.
All attempts at participation—
Feared and stigmatised—
Shunned by peers and society.
Thinking his condition contagious
They show only animosity.
His difference too strange—
An unsurpassable enormity.
Turning to service providers—
Main stream and voluntary—
Experts and places of worship—
Or those working for equality—
Despite the child’s clear-cut needs
Or personal priority
They single out impairment,
Culture or ethnicity
Now, at the doorway of death,
At the threshold of maturity,
Unable to communicate,
And with breathing difficulty—
Requiring constant ventilation
And remedial therapy.
Confined, restrained, straight-jacketed
By his muscular dystrophy.
Bedridden hours expended
In examining history.
He tries hard to understand
Life’s justice and equity.
Seeking meaningful answers,
Solace and serenity,
Yet ever returning to despair,
Wholesale regret and uncertainty
The barriers posed by impairment
And an indifferent society—
Invisible but hard as concrete
Abounding in their multiplicity,
Nurturing rejection and isolation
And all manners of impropriety.
Conveying the world’s begrudgement
Of deviance to normality.
Barriers restricting life’s joys—
Life unfulfilled incomplete empty,
Time spent in futile struggles
In seeking meaning and identity.
Not belonging to any world,
Lacking wholeness and integrity,
That is the lot of a south-Asian
Person with a disability.