NOT HAPPY JAN : Speech for Epilepsy Action AGM

Graeme Innes AM

15 October 2007

I acknowledge the traditional owners of the land on which we meet today.

Thank you for the chance to speak with you at your AGM today. AGMs are important formal processes in the corporate life of an organisation. But they also provide an opportunity to reflect on what the organisation has achieved over the last twelve months, and to look into the future at the challenges ahead. You - as members, directors, staff and supporters of Epilepsy Action - know the organisation much better than I do. So I'm not going to attempt a review of your past, or polish up my crystal ball for some future gazing.

However, I want to raise some more personal challenges with you- the challenges that you, I, and 20% of other Australians face- the day-to-day challenges of living with a disability. I'll do this by making some general remarks, defining discrimination, talking about some complaints which people with epilepsy have lodged under the Disability Discrimination Act, and end by talking about a positive initiative the Human Rights Commission has taken in the last few weeks.

The “Not happy Jan" campaign was a very clever way - several years ago - for a telco to get our attention. And it reinforced the view that the Babyboomer generation in Australia, and all generations following it, were prepared to speak up when they didn't receive what they regarded as their due- and sometimes even when they did. As a nation we are much more forthright than we used to be - and perhaps the pendulum has even swung a bit too far the other way, when you consider phenomena such as road rage, shopping trolley rage, and even (I understand) pram rage- usually demonstrated by the pusher rather than the occupant - although some sleepless parents may not agree.

If a consumer product we've purchased is not of sufficient quality, we take it back and complain; if our landlord fails to carry out necessary repairs, we complain. However, I've titled this presentation "Not happy Jan" because if we are discriminated against on the grounds of our disability, most of us just grin and bear it, or turn the other cheek.

We don't need to. In Australia, the Federal Disability Discrimination Act protects someone with a disability, or their relative, friend, carer, co-worker or associate - from being treated less favourably than someone without a disability. The Act prevents discrimination in many areas. For example, when you're trying to get a job, or applying for a promotion. When you're using a service such as a taxi, studying at school or TAFE, joining a sports club or you want to gain access to public premises such as shops.

Just in case some of you are wondering what constitutes a disability under the Act, it covers a broad range of physical, intellectual, sensory and neurological disabilities which include epilepsy.

One of the roles of the Human Rights & Equal Opportunity Commission is to process complaints about discrimination, and seek resolution. We receive around 1000 complaints each year throughout Australia under the Disability Discrimination Act. And if you add in State and Territory discrimination jurisdictions, the number goes up to around 3000. When you think that there are around four million Australians with a disability, and that a number of people lodge more than one complaint a year, those of us who complain is a pretty minuscule percentage.

Why don't we complain? Perhaps we don't want to admit our disability, or the consequences of our disability. Perhaps we don't want to stand ourselves out as different in that respect. Perhaps - deep inside - we view our disability as something to be a little ashamed of, rather than something lived with by one in five Australians.

Sometimes lack of awareness is a barrier. We don't know whether what happened to us is actually discrimination and what organisations or laws, if any, exist to protect us.

There are two major consequences of our general lack of preparedness to complain. The first is that we - as individuals - continue to be discriminated against. And the second is that the community doesn't change to accommodate our disability, and those of the many Australians in the same or similar positions.

I want to tell you a few stories of the exceptions to the rule. Those who have decided to lodge a discrimination complaint under the Disability Discrimination Act. To do this they followed a simple process which involves sending a letter or email describing what's happened to the Human Rights & Equal Opportunity Commission.

These stories will demonstrate the sort of improvements which people living with epilepsy can achieve - for themselves and many other Australians.

in the first, the complainant, who has epilepsy, alleged that he had been discriminated against on the grounds of his disability. The complainant had worked for the respondent as a gardener for a number of years. The complainant resigned from this employment to take up another position.

Several months later, the complainant re-applied for a position with the respondent, but his application was unsuccessful, as the respondent was of the view that the complainant's work performance and attendance had been unsatisfactory. The respondent stated that the complainant's epilepsy had been the cause of a number of work accidents.

The complainant provided medical evidence to demonstrate that his epilepsy was under control. The complaint was resolved by conciliation. The respondent agreed to provide the complainant with an apology, remove certain documents from the complainant's personal file, and assist the complainant to secure casual employment. The respondent also paid the complainant financial compensation of $500.

In another matter, parents complained that a special school attended by their son had failed to accommodate his disabilities. These included intellectual disability, autism and epilepsy. He was expelled after serious behavioural problems.

The complaint was resolved when the school undertook a series of initiatives, including procedures for greater consultation between teachers and parents, development of more specific individual education plans for each child to accommodate different levels of disability, and attendance for all teaching staff at a two-day training course on autism.

As you can see from these first two stories, complainants don't always get everything that they are seeking, but positive resolutions can be achieved.

In the third story, a woman with epilepsy complained that she had been told not to come back to a bowling alley after she bowled a ball hastily so she could sit down when she had felt a seizure approaching. At a conciliation conference the bowling centre agreed that the complainant was welcome to return, and paid her $1500 compensation.

Complaints can be lodged by post, or email. Our website address is www.humanrights.gov.au/disability_rights and our complaints infoline number is 1300 656 419. More than 50% of complaints lodged are resolved by conciliation. Of the ones that are not, very few go to a Court hearing, and they only go to Court if the Complainant wants them to. The process costs no more than your time, and as you can see can often achieve positive results.

May I turn now to a discussion paper we launched at the Human Rights Commission several weeks ago called "Time to consider the overlooked consumers". In that paper I called for more attention on access for older people and people with disabilities in the design of consumer electronics and appliances. The paper examines accessibility of consumer electronics and home appliances, and notes that design of such equipment is a major concern.

It's well known that designers tend to design environments that suit their own situations. Too often when designing products, attention is given to the narrow notion of who will be using the products, and not much thought given to all those people the product will exclude. This is the heart of the problem.

Our discussion paper researched access issues for blind or vision impaired people, the Deaf or hearing impaired, people with physical disabilities and those with limited dexterity or fine motor control. The project looked at accessibility of a range of consumer electronics, including:

• home entertainment systems and remotes,
• whitegoods and other appliances,
• home environment,
• portable devices, and
• personal care, health and fitness devices.

While it might be easy for some people to rely on visual displays to set the VCR channels or to run their washing machines, for example, these simple tasks become virtually unworkable for people who are blind or vision impaired. Quite often, just adding a dial would help. Heavy oven doors and remotes with tiny buttons are other examples of how better thought out design could make life much easier for some of the 20 percent of Australians who have a disability. For people with epilepsy, perhaps even the type of lights, or the way a display is lit, could make a difference.

The discussion paper provides a starting point to making consumer electronic products and appliances more accessible. It makes 15 recommendations to improve access, including:

• dialogue with industry,
• making access a feature of the Australian Design Awards, and
• developing grants and tax incentives for manufacturers willing to develop accessible products.

The full paper is available on the HREOC website. I encourage you to have a look at it, and start raising these issues through support groups and disability organisations. Only by speaking up will we stop being left out.

Kermit the Frog used to complain that "it's not easy being green". And, particularly in the midst of an election campaign, The Greens leader Senator Bob Brown might share that view. It's equally not easy to complain about discrimination, but - to quote another politician - life wasn't meant to be easy.

Having a discrimination complaint resolved, and the situation redressed, can be a very positive and empowering experience. And the flow-on effect - of achieving a community more inclusive of people with disabilities including epilepsy - can benefit both you and many other Australians.

The name of your organisation is Epilepsy Action: I challenge you to emulate that name when dealing with disability discrimination.

Thanks for the chance to speak with you today.