Australian Employers Network on Disability

The Kenneth Jenkins Oration
Delivered by Bill Moss AM
At the National Disability Services CEO Conference, Canberra
30th November 2009

It’s Time for a Fair Go

Firstly, thank you for the opportunity to present the 2009 Kenneth Jenkins Oration. I am very honored to be given this opportunity.

It is appropriate that The Honorable Bill Shorten, the Parliamentary Secretary for Disabilities and Children's Services is speaking here today because in seeking inspiration for this lecture I decided to dwell on some of his public statements.
 
Speaking at the 2009 WA Disability Collective Lecture Bill provided the most accurate summary of Disabilities in Australia that I have heard spoken by a politician. For this I congratulate him.

He Said:  "The treatment of people with impairment in Australia is a disgrace"

He said ….1 in 12 Australian children have a disability. That's leaning towards about eight plus percent of all our children under 14 years of age, or indeed about 317,900 children with an impairment, which could contribute to a developmental delay.  Around half of these children have a severe or profound limitation, which will shape their life.

He noted … Half a million Australians are primary carers of a person with a disability

… You are far more likely to be unemployed in our great nation if you have a disability.

… You are far more likely in our great nation to be poor if you have a disability.

He said…I would like to put to you tonight a view, which says that people with a disability, people with an impairment, are in fact eternal exiles in our own country.

He said…Australians are not malicious, but when it comes to impairment and disability, all too often unfortunately we still have a two-class society. Like all prejudice, prejudice against people with impairments is an opinion not sustained by any fact.

In fact, it is born of ignorance and a lack of empathy.

He said…There’s a challenge here that we all need to look at what we're doing and what we need to do differently.

These words from the Parliamentary Secretary are honest and true.
The question is what do we do about changing this terrible cycle we have created, a cycle that often imprisons the hopes and aspirations of many Australians that carry impairment and disabilities.

Today I would like to talk about some of the roadblocks in our society that lead to this cycle.

My name is Bill Moss, I suffer from FSHD, a rare disease which leads to a slow destruction of skeletal muscle.

FSHD is a slowly progressive disease. From my personal observations it has 3 phases of decline. Firstly, after many years of gradual decline in muscle strength, many trips and falls, you notice pain when you stand, followed by pain when you sit and finally pain when you lie down.

The slow deterioration means each week there is something you can no longer do that you could do a week earlier.

The progression is varied, the genetic causes unknown.

The impact on the negative psychology of a disease of this nature is unknown.

To be told you will be unable to use your arms or legs to do the simplest things in 5, 10 or 20 years time is in many ways a sentence of a slow death.  Especially knowing the disease will never abate, it will only get worse and worse still.

Imagine watching your young children run and play knowing that slowly they will deteriorate and end up in a wheelchair and you cannot do a thing to help.

The effect on how FSHD changes people’s life is not known. My guess is that it is very substantial. I know in my case it was significant.

FSHD is one of 30 major types of dystrophy, there are at least another 30 minor dystrophies all caused by different genetic disorders. All needing different cures

Dystrophy is only one of many forms of muscle wasting.

I was diagnosed some 28 years ago. At the time I was told there was nothing I could do about it, we didn’t know what caused it, or what made it progress, I was told not to work hard but enjoy life because I would be in a wheelchair by the age of 50.

In retrospect I now understood why I could not run as fast as other children at school, and why I threw my legs when I walked. Why I could not throw a ball or walk up steps quickly.

Nearly 3 years ago I retired after 23 years at Macquarie Bank and some 32 years in the finance industry. I retired as one of the highest paid executives in Australia's history, having built a real estate and banking business that managed close to $30 billion in real estate assets in over 20 global locations. I built one of the most profitable parts of the Macquarie Group from a team of 1 person. An achievement I am proud of.

In short, I had a good corporate life, but always wondered what could have been if I didn’t carry FSHD with me.

I retired at the age of 52 because of the hardship of coping with FSHD.

While I was cheating a wheelchair I was also cheating myself.
 
The travel, the hours, and the stress started to outweigh the pleasure of success.
 
I remember coming home at night after a 14 hour day of intense meetings and settling in to read my papers for tomorrow and not having the energy to untie my shoe laces.

When I could no longer stand I employed somebody to help me stand and move from meeting to meeting. When I could no longer drive I hired a driver.

I learnt how to train my mind to remember when I could no longer hold a pen to write.

My body was the loser… 3 years ago I thought it was time to hand the reins to the next generation and focus on my health, and the battle against FSHD.

Whilst my successors took the reins and headed off to confront the GFC, I headed off to confront FSHD. In retrospect I think I had the harder task.

What I found with FSHD was that very little had happened in 20 years, the spiel I was told in 1980 was the same spiel today.

We still did not know the cause, the genetic pathway or what to do to relieve the pain and distress.

In Australia no government funding had ever been given to fund research. FSHD was not widely understood by the medical profession, nor taught at medical school. No research had taken place. No desire existed to carry out research.

No national database existed. None of the money donated by FSHD sufferers to the MDAs had gone to FSHD Research.

I found as I researched FSHD- stories of misdiagnosis were common. Because the disease was not widely understood people with FSHD had been diagnosed as being spastic, sufferers of FSHD were found in mental institutions, they were misdiagnosed as having polio or other muscle disorders.
Often they were told they were tired or overweight. We were recently contacted by a lady in Brisbane who advised us that after 10 years of treatment for multiple sclerosis, she in fact had FSHD.

12 months ago I wrote a letter to the Honorable Nicola Roxon and asked a simple question “could you please confirm that no government funding had ever been carried out in Australia to research FSHD”.

I received the reply from Professor Papadakis at the NHMRC, which said: 

“The Australian Government through NHMRC has committed more than $14.6 million for research into muscular dystrophy, including facioscapulohumeral dystrophy since 2000 with 21 grants active in 2008 worth AU$13.m…”
I wrote back and said:

“We can find no record of any grants being made for FSHD research”

I then received a reply from NHMRC that said:

“We can find no record of any submission received or any funding approved for FSHD research”

The original letter from the government agency was just wrong.

How could Nicola Roxon and the NHMRS get it wrong?

Was the original response by the NHMRC incompetence or based on a belief shared by many misguided medical professionals that a cure for any dystrophy was a cure for FSHD.

This year a study of rare diseases in Europe by Orphanet found FSHD to be the most common form of Dystrophy. As the awareness of the disease rises so too does the incidence.

In 2007 I set up the FSHD Global Research Foundation. The foundation funds medical research into FSHD. It also seeks to create awareness of the disease and promote education.

The FSHD Global research Foundation has now funded or approved funding for 7 projects in 5 countries.

Last year it funded research that lead to the world’s first FSHD embryonic stem cell line, which is now being used in medical research.

None of the Foundation’s funding has been supported by any state or federal bodies, any medical research institutes, or universities.

In fact, since the establishment of the Foundation we have been requested by hospitals to provide funding for DNA testing and establishment of clinical centers for FSHD - Services that you would think would be provided by Governments.

The vast majority of rare diseases also suffer from lack of government funding.  Rare diseases are not popular with scientists and medical researchers because there is very little chance of accessing government funding.

Australia does not have a Rare Disease Institute. Perhaps, a time it did.

As I now reflect back on my life, to struggle with a disability is a burden you accept, but to struggle with a system in which you are forced to exist and the prejudices of people you engage with in society is an unnecessary burden.

To quote Bill Shorten again :

"Australians are not malicious, but when it comes to impairment and disability, all too often unfortunately we still have a two-class society"

The reality is barriers and prejudices are with you daily.

There is discrimination in seeking a job, catching transport or simply wanting to enjoy a day shopping, or a visit to the theatre or sporting event.

To illustrate this I would like to briefly give you a few examples of my own experiences.

I used to be a great sports fan until I found it difficult to walk or stand up. I gradually found I could not rise out of a traditional seat so I need at special accessible seat.

It was 2000 and the Olympics were coming. Muliplex had built a world class arena…  I paid $30,000 to become a platinum member of Stadium Australia.  For the first event I ordered a disabled seat.

I turned up and the seat number did not exist, the seat number was in fact an isle.

I was given a normal seat down a flight of stairs from which I noticed people sitting in the disabled seats standing and rising to go to the bar. I complained and was told, “We are sorry it should not have happened.”

Second time was the World Cup Rugby Final at Stadium Australia.  Again, I ordered a disabled seat, again I turned up and was told they were sold out and had to have a normal seat. The disabled seats were sold again to people who were not disabled. Next day I complained again. 

They said we are sorry it was the ARU’s fault not ours. The CEO of Stadium Australia wrote me a long email explaining why it was not his fault.

It is good to know that Sydney Opera House finally has a lift to take people in wheelchairs to the concert hall.

The media on Kurt Fearnly last week was interesting, outraged politicians demanding answers from Jetstar.

A gold medalist from the Para Olympics said to me recently she only feels disabled when she travels.

Many people with physical disabilities do not travel because it is too hard. Continually, you are wheeled to the doors of planes, where they take your walking stick and place it safely in the overhead locker and then ask you to get out of the chair.

The same happens at security checks where they ask you to take your shoes off – I look at them and say I can’t.

When I arrive back in Sydney from an overseas trip I am always reminded of The Westfield Crawl which could now be known as the Jetstar crawl.

For those of you that don’t remember, The Westfield Crawl derived its name from a Westfield shopping centre where wheelchairs were made available free of charge to customers. The problem was that the security guards stopped you taking the chair to your car. Westfield found themselves on the front page, when one disabled person was forced to crawl from the shopping centre to his car in the parking lot because he could not walk.

When I arrive at Macquarie Airports Sydney destination I am met at the plane in a wheelchair. They help you through customs, baggage and quarantine and take you to the curb and then tell you they can't take you across the road to the carpark as they don’t have the authority. At this stage the road seems as wide as Sydney Heads. I usually tell them about the Westfield Crawl and ask them if they would not mind tying my luggage to my ankle so I can drag it when I crawl.

At this stage you realize possession of the wheelchair is the key negotiating chip. When you are in it and they have another job to attend they always say, "ok I will take you but don’t tell anyone or I will be in trouble."

Do we need another Westfield Crawl at Sydney Airport before the airlines and the airport owner sort it out?

Now when I travel, I need to take a carer with me to help me get out of a wheelchair and to help me access toilets etc. I usually travel business class to take the benefit of a larger seat while my assistant travels economy.

Now Ethiad have a policy that no one can accompany a business class traveller into a lounge unless they are travelling business class - even to use a toilet.

True??  Or so we were told in Abu Dhabi. The Ethiad lounge in Paris had a different rule they just charged you $50 to bring your assistant in to help you go to the toilet. At least on the plane trip itself it was simpler, they just refused to allow my carer to come to the front of the plane to help me at all.

Ethiad are by far the worst airline I have travelled with, they have no regard for disabilities from what I have seen.

Many examples relate to people trying to do the right thing with the wrong equipment.

I arrived in Beijing last year, I was placed in a wheelchair, lifted to the ground and wheeled around to the front of the plane. There I sat for 15 minutes and waited for a special bus to arrive. When it arrived it was no different from the bus that departed 15minutes earlier, with 3 big steps. At first I was asked if I could walk up the steps and then the young 45kg woman tried to pull me up the stars to no avail until someone else turned up to help push.

Port Moresby was challenging, this airport does not have a hoist for wheelchairs, they use a container-lifting device to get you on and off the plane.

I thought I had seen it all as I flew out of Port Moresby last year, until I arrived in Brisbane.

We arrived in Brisbane International Airport late in the evening. We had about 40 minutes to connect to a flight to Sydney. The plane landed and parked on the tarmac.

I was sitting alone on the plane with my carer waiting for a hoist. At first I was told they could not find one, then it was busy and then the plane was too small to use the hoist. As time moved on to about 30 minutes they decided to pick me up one person on each arm and each leg and carry me down the stairs.  Once on the tarmac I felt safe until they said it is against regulations to allow wheelchairs on the tarmac so I had to be pushed into a truck and driven to a lift. The problem was the lift was closed; we waited another 30 minutes for the lift to be opened. We were then able to walk to customs where about 200 wheelchairs were in storage.

Port Moresby looked good compared to Brisbane International Airport.

Generally there are rules, systems and infrastructure, but these are useless unless the individuals involved take their jobs seriously and use common sense.

In all the stories I have quoted the Boards would be horrified, the CEOs will apologize and say it should not happen but it does.

Getting transport right is critical, without effective transport you force people to accept they cannot lead a life that they deserve.

We build lifts now at train stations to help wheelchairs access platforms but the carriages themselves are not accessible in many cases.

Monica, the patron of FSHD Global Research Foundation is confined to a chair, she cannot use her arms and legs and lies on her stomach. Her father told me when she needs to get a train from the Blue Mountains she can only access certain types of carriages because of the length of the wheelchair. When she wants to catch a train she has to wait sometimes for hours to find the right carriage to enter. If you phone NSW Railway they can’t tell you what carriages are on what trains.

All new public transport, trains and buses must comply with International standards and must take wheelchairs.

As I found out in NSW, the government does not consider Taxis as public transport.

About 6 years ago, I became aware of the terrible plight of people in Sydney who needed to rely on taxis. I was at a fundraising dinner for muscular dystrophy when the speaker who was severely affected with Dystrophy had to make his presentation one hour early because he had been contacted by the taxi company and told they had moved his collection time and if he could not make it he would have to make alternative arrangements.

I started to research the industry and found stories about people who waited up to 2 hours for a taxi and relied on taxis daily to travel to work, school or hospital.

In NSW there were 300 licenses available that no one wanted to take. Why, because you lost money driving an accessible taxi.

Why?  Because of the low number of taxis on the road you had to travel long distances between jobs which wasted time.

I approached Macquarie, which at the time had a genuine philanthropic nature. They agreed to let me establish this business and try and get it to a scale where it could be sustainable.

A simple and worthwhile initiative.

Now if you are providing services at a loss for the community you would expect government support.

Not in NSW.

At the time Sydney had about 50% of the ratio of accessible taxis that Brisbane had. The lowest level in Australia.

Every step of the way the Government tried to make this business fail. 

The company was forced to use the call centre of its competitor and the promised number of licenses were never given.

What I had stumbled onto by accident was a battle over payment systems.

By their actions the NSW Government did not want to solve the problem of accessible transport. They still have not solved it today.

I discussed the matter with the leader of the opposition Barry O Farrell who did not want to make an issue of it. It’s very complex he told me.

When I retired, Macquarie decided to sell the business and the Director General of Transportation NSW, after reneging on his promise to help Lime taxis increase its fleet to 100, resigned and joined Cabcharge.

If the NSW government wanted to fix the problem it could do it tomorrow.

In London all taxis are accessible. It is simple make all new vehicles accessible.

Why is it that our politicians avoid solutions that are simple for the fear of disrupting the status quo and vested interests?

Bill Shorten - where is your view on this industry?

I would now like to talk about employment.

The percentage of people employed with a disability in our country is a disgrace.

Why is this?

There is a lot written about this, and no real plans to change it.

The reality is businesses are prejudiced, and jobs are often not prescribed to suit people with a disability. People can't physically get to work and many buildings do not comply with the standards required.

There is no real effort made to make buildings comply. The Property Council is more interested in protecting building owner’s rights.

The reality is statistics will show people with a disability in the workforce are more loyal and stay in the workplace longer.

If I were to ask the Board members of top Australian companies would they encourage greater participation in their company workforce by employing people with disabilities? They would all say yes.

So where does it break down.

I recall in Macquarie having referred somebody with an obvious physical disability to my own department for consideration for a position. I enquired some weeks later about the outcome.

I was told we could not employ them because they were disabled.

This comment taught me a lot. It is not the CEO, or the Board, it is middle management.

Again the answer is simple; legislate for a minimum percentage of the workforce that carry a disability to be employed in large companies. Companies that do not wish to comply can pay a penalty. If we do this we will see a change in attitudes to employment.

More people with disabilities in the workforce will change attitudes and remove prejudices.

If we solve getting a job and getting to work, we can then work on infrastructure within our cities.

Look at Sydney, holes in the footpath, lose tiles, uneven footpaths.

I watched several months ago in Sydney on the corner of Pitt St and King St as a man tried to push his wheelchair up the gutter onto a footpath, the angle was excessive and made more difficult by a large hole in front of the gutter.

I watched as the cars passed the back of his chair as he was stuck on the road. This hole had been there for months.

I contacted Clover Moore who flicked the problem to George Angelis the Manger of City Infrastructure.

George told me, it is not his fault. The hole was made by the Water Board, and they don’t tell the council what they do.

While we stood on the corner a lady in a stroller pushed down the gutter into the hole and the child almost fell out in front of an oncoming car.

Whose fault is it - Who cares?  Definitely not the idiot from the water board who left a hole or the council that stared at it for months.

Sydney Council ignored other issues at this meeting I complained about which I regarded as dangerous for people with disabilities.

Obviously the Manager of City Infrastructure doesn’t care about disability access.

Finally, before I leave public service insanity, why is it we build disabled parking bays but don’t have cutbacks in the gutter for people to wheel their chairs up - Insane. We force them to wheel their chairs a city block on the road in traffic before they can access the footpath. We have international hotels built under council approval, where when you arrive in an accessible taxi you have to wheel to the next intersection to access the footpath.

The clear message for all people in Australia is “give people with disabilities a Fair Go.”

Life could be made so much easier for those that carry disabilities.

In conclusion I will quote Bill Shorten again.

Bill said: “I think the Government's started the process of change, but I do think that we need to educate Australians of the reality of living with disability, what it is. I do think that we need to make sure people not in this room become aware of our views very quickly”