The rights of young adults with neuromuscular conditions

1 June 2009 I shall highlight the work of the Muscular Dystrophy Campaign which last year, with financial support from V - the volunteering charity, launched the first young campaigners network for 16 to 30-year-olds interested in highlighting and lobbying for the rights of young adults with neuromuscular conditions.

The young people in the network, entitled 'Trailblazers', have set their own goals to fight against the social injustices experienced by young people living with muscle disease or a related condition, and ensure all young people with muscle disease or a related condition can gain access to the education, employment and the services they require.

The Trailblazers network is made up of 12 regional campaign groups, led and run by young people with neuromuscular conditions who identify, research, report and campaign on issues that are important to them in their region. Trailblazers are also running three national campaigns on access to education, leisure facilities and public transport.

They find that access to public transport for young disabled people in Britain continues to frustrate and disappoint service users.

In 2009, four years after the passing of the Disability Discrimination Act of 2005, young people with muscle disease travelling on a bus, a train, the London underground network or in a taxi continue to find themselves unable to use services which, by law, should be available to all.

In response to this, Trailblazers have launched an investigative report, 'End of the line', into the state of public transport in the UK. Their five key findings are:

Wheelchair users have less choice when using public transport and as a result are forced to pay more than their non-disabled peers.
Young disabled passengers often feel like second class citizens on public transport through a combination of unreliable technology, poor disability awareness among staff and inaccessible stations.
Young disabled passengers cannot always access the first bus, train or taxi that arrives at a station or stop.
The Assisted Passenger Registration Service (24-hour advance booking) for trains restricts the spontaneity and independence of disabled passengers and fails to provide a reliable service which passengers have confidence in.
Non-wheelchair users with mobility difficulties also faced serious problems when attempting to use buses and trains. Bus drivers often fail to park next to the kerb, meaning Trailblazers have a greater distance to climb into the bus. Drivers can pull away from stops too quickly before a passenger is seated and safe.

Trailblazers are calling on the government, local authorities and public transport providers to:

Ensure that accessibility on all modes of public transport including air travel is at the heart of all public transport planning, not merely a concept to pay lip service to.
Ensure that, until such time when all trains can be boarded and disembarked independently, the Assisted Passenger Reservation Service is improved to guarantee that all disabled passengers receive a universally high standard of service.
Conduct a major review of accessibility on buses and coaches across the UK.
Ensure that taxi subsidy cards are available for disabled passengers with a discount that reflects the dependence many disabled people have on them.

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Promoted by Paul Foy on behalf of Dave Anderson, both of St Cuthbert's Church Hall, Shibdon Road, Blaydon, NE21 5PT