Are we helping people with disabilities the right way?

Senator Bathmavathi Krishnan.

NOT too long ago, I worked with an artist, Kristina Diaz, on "Unwavering Truth: Archive of Our Own", an exhibition she was putting together at the Queens Museum in New York.

Diaz, who lives with a genetic disorder called Neurofibromatosis Type 2 or NF2 approached me - as she wanted to include the poems of a Malaysian NF2er, my late partner Keisha Petrus.

She felt Keisha's writings fit the aims of the exhibition; to demonstrate that there is more to the artist, the writer, the person than just the disorder, which  causes benign tumours to grow anywhere in the brain, along the spinal cord and peripheral nervous system.

NF2 affects one in every 25,000 people, and more often than not it leaves people living with it deaf, wheelchair bound or with facial paralysis - or all of the above.

But in spite of that, NF2ers like Keisha had a knack for inspiring others, pushing themselves to prove that impossible is just a state of mind, and if need be sending us wake-up calls to listen to our conscience.

This is why one of her poems "Where Were You" called out to me, reminding me of why I chose to become a journalist after completing a law degree - and with Christmas around the corner, this stanza among others rang in my conscience.

"She sat in her wheelchair, by a busy road;
Calling for a cab, a bus to spare her a ride.
“We’re full, we’re busy,” they said with disgust they did not hide,
Where were you, where was your moral code?"

It reminded me of a common occurrence around festive seasons in Malaysia, as corporations start performing their "corporate social responsibility" or CSR work by making public donations to orphanages, old folks homes and homes and centres for people with disabilities.

Truth be told, I don't have anything against such donations, or CSR events where people with disabilities are treated to a festive lunch or dinner with the cameras of the media and corporate public relations departments clicking and flashing away.

But I always wind up asking myself one question - is this the right approach?

And after speaking to Dewan Negara Senator Bathmavathi Krishnan, well, she has a convincing argument as to why the corporate sector can and should do more.

"CSR should not be a one-off event or a one-off action. It should be a commitment where you offer sustainable opportunities. You help a person become economically independent by offering a job," said Bathmavathi, who is a wheelchair user herself.

I had asked Bathmavathi for her opinion on the current CSR habits of Malaysia's private sector.

"When companies say they have community service efforts, they usually do this during festive seasons such as donations to disability organisations and inviting people with disabilities to parties and feasts - and that they call CSR. They have to go beyond that," she said.

And Bathmavathi has a point here. Give someone a fish, they'll eat for a day. But if you teach them to fish, and give them the means to fish - they'll be set for life.

This is basically the "rights-based" approach that many activists have been calling for;  that initiatives to help people with disabilities should focus on giving them their due - equal access to society through building proper amenities to allow access to public spaces, equal access to primary, secondary and tertiary education through proper policies, instead of short-term or one-off charity efforts.

Employment is part of this and Bathmavathi told me the equal right to employment was laid down in Section 29 (1) of the Persons with Disabilities Act 2008 which states that people with disabilities shall have  the right to access to employment on equal basis with persons without disabilities.

However, she added employers often took the easy way out by not employing those with disabilities as the Act lacked any means of punishment for breaching its provisions.

Bathmavathi said that by finding excuses to not hire people with disabilities, companies were not treating them as equal citizens under Article 8(1) of the Federal Constitution - which states all persons are equal under Malaysia's laws.

She also debunked the notion that people with disabilities could not perform as well in the workforce compared to their able-bodied peers, citing a company in Kedah that found its productivity increasing after hiring deaf employees.

"The company had fewer issues with work ethics, such as attendance problems after hiring them," said Bathmavathi.

So with this I place Keisha's call In Your Face this Wednesday, as she ended "Where Were You" saying; 

"Now that you have seen the truth laid bare
And the mud in which Malaysian hippos wallow
Is the honest reality too hard to swallow?
Where will you be now, will you care?"

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Tan Yi Liang


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