Respecting people with disabilities

This week I experienced two contrasting events concerning people with disabilities. At the very beginning of his visit to the Holy Land the Pope visited a home for mentally and physically handicapped youngsters in Amman. He did this purposely to focus world public opinion on the contribution of people with disabilities to society.

By sheer coincidence, during lunch with friends a few hours later, I was praising the launch of the project to revamp St George's Square, Valletta. The husband of a person with a disability interrupted me. "This project is not good news for people with a disability and their relatives. In the square there were reserved parking spaces used by disabled people when shopping in the area. Will these still be available or will it become another out-of-bounds area for us?"

The news bulletins told us of no provision for people with a disability. My friend mentioned other pedestrian zones in Valletta and a newly pedestrianised zone in Sliema that have now practically become out-of-bounds for disabled people, as their previous parking facilities there have disappeared.

This situation reminded me of the slogan 'Access. Success.' The National Commission for Persons with Disability (KNPD) used this slogan to remind us that lack of access is severely limiting disabled people's development and contribution to society. We who are not disabled have become a bigger problem than disabled people's disability. In spite of so many laws, the rights of these people are still not being respected enough.

Disabled people's right to autonomy and dignity is sometimes not even sufficiently well respected by associations that work for the disabled. For example, the Multiple Sclerosis Society of Malta does a lot of work for people with multiple sclerosis (MS) but stops short of fully respecting their right to choose the services of the professional they have most trust in.

MS is a disease of the central nervous system (the brain and spinal cord). Its symptoms vary from problems with the senses of sight and touch, to mobility and co-ordination. For this reason, several people with MS - there are about 100 in Malta - need the services of a physiotherapist. The MS society, which has more than once benefited from public funds, subsidises this service but imposes its choice of physiotherapist on disabled people. On behalf of a person with MS, I complained to the society but to no avail.

In an age where we all treasure the right to choose the professional of our trust it is unacceptable that disabled people can only do this if they forfeit the subsidy that should also be theirs by right. Such a decision smacks of a paternalistic attitude towards people with disabilities.

Unfortunately, because the vast majority of people with MS have been brought up in a paternalistic mentality, most of them not only comply but feel grateful for the 'charity' they receive. Others grumble but do nothing about it. One person with MS has decided to take action and I am helping her.

The KNPD, as well as funding agencies such as the Community Chest Fund and the L-Istrina committee, should see to it that non-governmental organisations working for the disabled fully respect their right to choose the professional they have most trust in.