The Importance of Community

By: Sandy Lahmann

Is there a disability community?

Some people have told me they don't think so. But oh, yes, there is. It's fragmented, but it's there.

No, there's no disability community in which people who use wheelchairs, people who are blind, people who are deaf, and people who have traumatic brain injury, etc., etc., all join together for common goals.

The disability community is fragmented but people who have similar disabilities can be found gathering together at every opportunity. The Deaf community is it's own culture, a culture rich in it's own traditions and values.

I'm a member of the adaptive sports community, in which athletes with disabilities gather together to ski, bike, play basketball, etc., in our own unique ways. And everywhere there are support groups, where people with specific types of disabilities gather together to encourage each other, support each other and offer wisdom.

Adults with disabilities always find each other. We need each other, so we find each other.

When kids have disabilities, the focus is on inclusion, that they are given the opportunity to learn with their non-disabled peers. This is important because as adults we are always working and interacting with our non-disabled peers and we want the same opportunities they have. So inclusion is important, but can it be carried too far?

There is danger in isolating children with disabilities from their peers with similar disabilities. They need each other. Let me explain.

When a person with a disability, child or adult, is interacting with their non-disabled peers, it is always a performance. Their non-disabled peers are generally looking to see if the person with the disability can do “it.” Can she open the door by herself? Can he push his wheelchair up the hill? Can she pass that test? Can he manage his job adequately? Their non-disabled peers often assume the person with a disability will not be able to do many things, so they are frequently wondering, “Can he or she do it?”

Then the person with the disability is often in the position of having to prove they can do it, whatever it is. God forbid we stumble. God forbid we hesitate. If we hesitate they will think we can't do it. This is a performance. We are being watched, so do it well and do it quickly. (And please don't let me start spasming while I'm doing it!)

This can be exhausting.

So I am always eager to join my disability community, which is the adaptive sport community. Finally, a break from the performance. I don't have to prove myself here. I can just be me because all my friends with disabilities already know I'm a capable, worthwhile, wonderful person, even if I stumble, hesitate or fall flat on my face.

My friends with disabilities similar to my own get it. They understand me and the world we all must deal with. Big sigh of relief. So I can go ahead and play wheelchair basketball and it doesn't matter if I make the basket or not. And it doesn't matter to my friends if I start spasming or not. Some of them are spasming as well. I'm home.

So when we raise children with disabilities, make sure there are plenty of opportunities for inclusion, because they need the same opportunities as every other kid. However, don't forget to give our children with disabilities the chance to be around each other, because they will encourage each other and support each other. And only then will our children breathe freely.

Yes, there is a disability community. It's alive and well and critically important. 

Don't Write about Me Just Because I'm with disability

According to Statistics Canada's 2006 Participation and Activity Limitation Survey, there are 4.4 million people with disabilities in Canada. Despite representing such a large percentage -- 14.3 per cent -- of the Canadian population, people with disabilities often feel isolated, in part because they seldom see or hear people like themselves in the mainstream media.

The media as a whole plays a key role in shaping and perpetuating public attitudes and values. However, more often than not, people with disabilities are viewed as objects of fear and curiosity rather than as productive members of society.

The media has the power to be a platform for social change. Historically, the media has encouraged debate and supported those who stand against oppressive practices. By continuing to stereotype people with disabilities, however, the media perpetuates myths, isolates millions and neglects to present an accurate picture.

The way people with disabilities are covered is problematic because it suggests attention is merited only when a person with disabilities can be portrayed as a superhero or a victim.

Don't feel sorry for me

For example, I was labeled a superhero. In an article that appeared in Kamloops This Week in May 2007, shortly before my graduation from Thompson Rivers University's social-work program, the reporter portrayed me as "a climber of a Mayan temple." He said I had been climbing pyramids since the day I was born.

In my view, receiving a social-work degree is something anyone can do. I was doing what I wanted to do. It wasn't something that should enable me to be elevated to a higher pedestal. My portrayal in the story made me feel everyone was placing expectations on me and I had to accomplish them. I could have inspired other people or I could have made them feel they were not capable of accomplishing the same. (On the other hand, sometimes I feel as though I have climbed many mountains, so it is a bit of a contradiction.)

At other points in my life, such as when I was featured in an article in the Elliot Lake Standard, I have been portrayed with pity as well as having superhero status: "Though bound to a wheelchair, unable to move her limbs, her voice silenced by a severe form of cerebral palsy."

When I see myself portrayed this way, I feel uncomfortable because I do not want people to feel sorry for me. I do not feel mentioning my disabilities was necessary. By stating I was wheelchair-bound, the reporter made it sound as though I'm not able to participate in daily activities.

The media places much emphasis on portraying people with disabilities as victims and heroes, which causes people with disabilities to feel they might not be normal unless they fit into one of these stereotypical categories. Others probably view people with disabilities the same way. This creates a distorted picture of our society.

A 2000 study conducted by British researchers Caroline Cooke, Liz Daone, and Gwilym Morris, entitled "Stop Press -- How the Press Portrays Disabled People," recorded the number of times negative words were used in news media to describe disabled people. Negative terms were often used in stories involving people with developmental and psychiatric disabilities. Words regularly used included handicap, cripple, wheel-chair bound/confined and sufferer. Other words used included vulnerable, abnormal, damaged, retarded, hopeless and afflicted.

It is essential the media portray people with disabilities fairly and properly in order to educate and change society's perceptions. Triumph over tragedy has a place but journalists should be selective in the areas in which this frame is used. People with disabilities should be portrayed accurately and not over-the-top.

Below are a few suggestions open-minded journalists can use to write engaging stories involving disability issues:

Replace passive words with active words. Avoid using terms like (the) handicapped, afflicted by, suffers from, victim of, confined to a wheelchair, wheelchair-bound, mentally handicapped/subnormal, cripple, invalid, the disabled, able-bodied. Use instead, disabled people, has (the condition or impairment), wheelchair user, has a learning disability, disabled person, disabled people, person who has cerebral palsy, non-disabled.

Mention a person's disability only if it is necessary to the story. Explore the context. Beware of accenting negativity and loss.

The same is true when it comes to medical details. There's nothing wrong with discussing when someone is experiencing difficulties, but try to avoid exaggeration and assumptions.

Speaking of assumptions, journalists should never assume their assessment of a person's disability is correct. Ask the person directly.

The British study also found disabled people and disability issues were not recorded accurately or objectively. When people with disabilities were portrayed in the media, their medical conditions were often sensationalized, again placing people with disabilities on a pedestal.

The study found national newspapers tended to focus on health, medical research and legal issues while local newspapers emphasized stories dealing with fundraising in connection to people with disabilities. The most common categories were the "brave disabled person raising money for a worthy cause" and "the family member advocating on their behalf." In the brave disabled-person category, subjects were seen as heroes with superhuman qualities or individuals needing charity.

Missing from the press was any exploration of why disabled people and their families were forced to fundraise for necessary services or equipment in the first place. None of the papers paid much attention to issues like education or employment.

A cancelled conversation

What society needs to realize is that people with disabilities are concerned about their everyday happenings like everybody else.

From 1998 to 2007, the CBC produced Moving On, which was broadcast across Canada and reported how issues like the workplace, health, technology, relationships, arts, sports and recreation related to disabled people in their everyday lives. At its prime, the program's weekly audience averaged 200,000 viewers.

But, after a decade on the air, CBC cancelled the program, attributing the decision to low ratings. The Canadian Media Guild, which represented workers with the show, said the cancellation reflected other factors including how far off the public agenda disabilities issues had fallen.

By reporting fairly and accurately and knowledgeably, journalists can play a major role in reshaping the way people with disabilities are viewed by themselves and by others in the community and returning the issue to the public agenda. It absolutely needs to be done. 

Are you ready and able?

On first glance at CSR tools such as the UN Global Compact, the GRI guidelines and ISO 26000, disability does not jump out as one of the big issues that companies should be thinking about. This seems to be because even though the need to promote and respect the human rights of people with disabilities is impliedly included in the “human rights” sections of these tools, it is not always expressly referred to in them.

However, there are 470 million disabled people of working age in the world, 238 million of whom live in Asia. Moreover, in 2000 it was estimated by the World Bank that the annual economic cost of depriving disabled people from the workplace is US$2 trillion. When this is taken into consideration it becomes clear that all businesses should be thinking about how they can best respect and promote disabled people and their rights when formulating and implementing their diversity strategies.

Businesses will inevitably face a number of challenges in the process of integrating specific disability related policies and practices into their CSR strategies and corporate culture, but the opportunities of doing this are huge, not only in terms of risk and brand management, but also taking into account the potential new markets that could be opened up as a result.

 Is all of this enough to persuade you to do more to respect and promote the rights of disabled people? If so, then read on, because in the rest of this article we are going to show you how you can go about this in four easy steps.

 

1.  Get out there into the community

In order to foster a corporate culture in which disabled people are truly accepted and integrated, businesses should first take steps to raise awareness of disability issues and to dispel any anxiety that their employees and stakeholders might hold about how to react if any when they come into contact with disabled people.

For example, UBS Singapore arranges talks and events on various special needs such as autism. These events are open to families and other organisations and help to raise awareness of the issues relating to people with disabilities as well as giving all involved valuable opportunities to interact socially on an informal basis. In December 2006 UBS Singapore also helped to raise awareness of the potential and benefit of employing persons with disabilities by sponsoring the Equal EmployAbility Alliance forum.

Corporate events such as these can really help to promote understanding of disability and to dispel any preconceptions that employees or other stakeholders might hold. Conversely, they can also help promote your organisation to disabled people themselves as a place that they might want to work in the future. This in turn will go a long way towards fostering a truly diverse and inclusive culture within your organisation.

 

2.  Help promote fair competition

Lack of access to education and rehabilitation is a big issue according to UNESCO, with more than 90% of children with disabilities in developing countries not attending school. Whilst it is the primary responsibility of governments (and sometimes NGOs), and not businesses to provide disabled people with the resources necessary to get them to work, it will often be in the interests of promoting and embracing diversity for businesses to engage with the bodies which provide these services. 

This can be done by forming partnerships with government bodies or NGOs whereby the business hands over its money, resources, or skills (if appropriate), and the organisations use these to improve their services, by widening access and/or improving quality.

A good example of this is a partnership that GlaxoSmithKline (GSK) reports it set up with the UK charity Leonard Cheshire Disability (LCD) in Galle, Sri Lanka. According to GSK, the LCD Disability Resource Centre was set up in the wake of the 2004 Asian tsunami. This centre was the first of its kind in the area to support access to health and rehabilitation services, provide inclusive education, and create livelihood opportunities for young disabled people. Direct results from this partnership can be seen through the eyes of one young man who the centre helped – he now owns his own business selling spices to local people. By helping to provide access to rehabilitation and education for this man, GSK therefore also helped him find work, enabling him to lead a normal life.

This project demonstrates very well how partnerships can be formed between businesses and public sector organizations to help disabled people develop the necessary skills to be able to compete with able bodied people for jobs, demonstrating their commitment to diversity and improving their competitiveness in the marketplace at the same time.

 

3. Make your workplace accessible

Disabled people are often excluded from society not directly because they are disabled themselves, but indirectly because we live in disabling environments: think of all those times you have walked up a set of stairs to get into a “disabled friendly” lift, and then think about how someone in a wheelchair would get up the stairs. To the extent that organisations are able, it is therefore important that they make their workplaces accessible for disabled people.

Some businesses are obviously not going to have the funds to make big adjustments to their working spaces, but there are often government incentives available to assist with this. For example, the Singapore Ministry of Community Development, Youth and Sports created the “Open Door Fund” in 2007 providing employers of disabled people, amongst other things, with financial support to modify workplaces to accommodate the needs of disabled people.

Feedback can also be obtained from the people with disabilities themselves as to what accommodation needs to be made for them whilst at work; businesses might find after doing this that the adjustments actually required are much more minimal than they had anticipated, or that it is not actually the business’ responsibility to make the necessary adjustments but that of its building management company. For example, UBS obtained feedback from its disabled employees, and as a result of this has persuaded the company managing its building to make a number of modifications to increase accessibility.

 

4. Accept, embrace and harness the skills of disabled people within your business (and outside it)

A number of Asian states, Hong Kong, China and Vietnam included, already have disability discrimination legislation in force, and so businesses there are not currently able or allowed to discriminate against disabled people either in the recruitment process or whilst they are at work. However, as you have heard from us many times, CSR is all about going beyond the law.

In an ideal world, if businesses have made efforts with the suggested steps above, then by the time disabled people come to a job interview or join the business its workforce will have let go of any preconceptions they may have had about disability. However, this is sometimes easier said than done. Ultimately, no matter what good intentions they have, people are always going to be curious and a little bit apprehensive about anyone they perceive to be different. So how should this be overcome?

This is a difficult question, and the only real answer is to give it time. All human bonds and relationships are built on common experiences and develop gradually over a period of weeks or months. Think about the person who sits opposite you at work. When you first met them it is likely that you noticed every day what kind of clothes they were wearing, what accent they had, etcetera; all the surface things. But then, as you got to know the person better, you probably stopped noticing all of those things.

To truly embrace disability both within and outside the workplace, businesses should therefore ensure that able bodied and disabled people work together on an equal basis, and simply leave them to it. Eventually the nature of the relationships will change, and whilst the disabled people will stop noticing what colour shoes their colleagues are wearing to work every day and will instead start noticing who their colleagues really are as fellow workers and what they can bring to the business, the able bodied people will in turn stop noticing the disability itself, and will start to see who the disabled people really are as fellow workers and what they can bring to the business.

A good way for organisations practically to achieve this without having to make a firm commitment from the outset might be, as is done often before employing able bodied people on a permanent basis, to offer disabled people internships. UBS has taken this approach in its Singapore office and thinks that it serves as a useful “courtship” period, giving both parties the opportunity to get to know each other. 

This approach can further be replicated in the course of your business’ relationships with external contractors, suppliers and other stakeholders and in this way you can facilitate a change in attitudes towards disability not only within your own workforce but also on a stakeholder- wide basis.

True acceptance and understanding of disability and disabled people is still a very long way off, especially in many countries in Asia. However, by following the four easy steps set out above, businesses can play a very large part in helping us to get there. ■