Whose Problem Is It Anyway?

By – Anumeha Srivastava

Nabo and Deb*, Haemophiliac teenage brothers from a distant village in Assam were born in a poverty ridden family. With no access to medical care, their frequent joint and muscle bleeds led to knee and elbow deformities even before they could meet a Haematologist. Amit*, a person with high level tetraplegia from Bihar was sent home by the spine surgeons who attended to him after his fall to ‘wait for death to come’. No one ever told him about the possibility of rehab and living independently on a wheelchair. Out went the scope of him resuming the role of the bread earner of the family. Piyush* discontinued school despite being an enthusiastic learner because the headmaster couldn’t arrange for his class to be held on the ground floor. The cerebral palsy that affected his lower body also stripped him the chance of completing his education respectfully.

The problems of people living with a disability are many, but the biggest of them all is that there continues to be very little ownership for addressing the problems. Chronic disabling conditions could range from Osteoarthritis to motor-neuro degenerative conditions, Spinal cord injury to Multiple myelomas, Autism to Down’s syndrome, Alzheimer’s disease to visual disabilities. And none of these people could attain a high standard of living without the help of several disciplines of people coming together to empower them.

One might argue that there are bigger challenges to solve before a country like ours could engage in a discussion about quality of life and such. But could there be non-capital intensive baby steps in the direction to set the pace? Here’s a list of gaps that I have observed

Sensitisation of the already qualified

Any person with a disability meets at least a dozen doctors, over 3 varieties of therapists, nurses, psychologists, social workers and sometimes even shrinks. There occur large gaps in timely diagnosis, appropriate treatment plan and adequate referrals for patients with disabilities. Our student doctors, nurses and allied health professionals, require sensitisation about the nature and prognosis of chronic disabling conditions whether or not their primary specialty requires them to treat such patients regularly.

From patients to persons with disability

Patients might receive adequate medical treatment but often fall through the cracks when they go back to their regular lives. Support groups can act as the bridge for a disabled patient to become a person with a disability. High functioning people require a push from their doctors, therapists or social workers to lead such initiatives. Such microcosms could become the spokes for larger organisations working for the cause.

Community based Rehabilitation

An underrated but marvellous concept is to enable the community leaders/ local health workers to identify disabilities and ask for help. Organisations working closely with communities in other spaces could cross utilise their resources. In fact identifying a stakeholder with a disability works wonders in such cases.

Help employers create opportunities

I was recently requested to reconsider employing a therapist with a seizure disorder. And the request came from a fully qualified medical professional. It is easy to imagine why employers with no medical knowledge do not wish to employ people with disabilities. Corporate leaders and medical professionals need to work together to first rehabilitate and then create employment opportunities for such people. And while it sounds easy, the task comes with many layers of challenges.

The challenge is to resolve for the lack of ownership among the people working closely with disabilities. Thankfully, some organisations have already explored some models and are doing ground breaking work in the space.

• Association of People with disabilities: www.apd-india.org: Working to rehabilitate and empower children and adults with varied disabilities
• India Inclusion Summit: www.indiainclusionsummit.com: A community engaging thought leaders from among people working for disabilities
• Enable India: www.enableindia.org: Creating employment opportunities for people with all kinds of disabilities
• Planetabled: www.planetabled.com: An inclusive travel partner organisation with a focus on people with disabilities.

P.S. –  Nabo and Deb are doing better after learning about exercises for strength, factors for bleed control and getting a brace for their elbow and knee flexion deformities. Amit now works as a peer mentor for other spinal injured people and lives with minimal support from his family. Piyush is about to complete his high school through home schooling and continues to dream of making it big in life! Kudos to all the people who fulfilled their roles at the various steps in their rehabilitation.

*All names have been changed