In no particular order:
1. Many groups are driven by individual parents who are also carers for a child with disability, burnout and lack of support make it difficult for many parents to make long term commitments to public advocacy.
2. Many groups are driven by individual parents and are also under pressure to try and provide services for their own child, taking the bigger view and working on behalf of people you've never met or will ever know is often challenging.
3.Charities who rely on government funding are reluctant to make strong statements that may be critical of government or public services. People with disabilities end up disenchanted with a group which does not give true voice to their concerns or frustrations.
4. With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life,service providers compete with each other for whatever crumbs the powers that be will throw their way and see each other as competition rather than partners.
5.With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life, parents and service providers are aware that resources given through patronage can just as easily be transferred elsewhere resulting in a culture of fawning respect for those in positions of power and no true commentary on that state of service provision for people with disabilities.
6.The need to fund raise in order to survive directs energy and resources towards collection of money with little energy left over for what should be the real reason for existence of these lobbying groups which is to lobby for change for all. The leadership of these groups often sees their purpose as to continue the existence of the group and self protection rather than any action on behalf of the disability community as a whole.
7. People with disability are not facilitated to self advocate by their service providers or the staff working with them, and where it does occur it is the exception rather than the rule.
8. Powerful professional groups believe themselves to be holders of the 'truth' or expertise when deciding what is in the best interests of people with disabilities , yet these professional groups remain silent on the lack of a legal or legislative framework for people with disabilities to exercise their rights in Irish society.Self interest clouds their ability to act on behalf of those to whom they have a duty of care.
9. Mainstream society, the political class and the permanent government of the civil service do not actually believe that people with disability have rights which should be protected , if they did people with disabilities would not have faced the horrific cuts in services and education which have been perpetrated against them in the past 12-18 months with so little backlash for those making those cuts.
10. Disability is still perceived by many in society as shameful or stigmatising to the person or family affected...its an unspeakable truth that has to be faced up to.
11. Some advocates believe that only positive story lines about people with disability should be aired and that stories focusing on needs/deficits rather than strengths/successes of people with disabilities further alienates the public and builds further stigma. We are still struggling to see people with disability as people first, who are as complex and multidimensional as everyone else on this planet.
12. People with disability and their carers are afraid of losing what little service they have, exhausted, isolated, forgotten, devalued...people have to choose day to day survival.
Mmm, so how do you start to build an advocacy and lobbying group who works to enhance the quality of life of all people with disabilities, who is not afraid to confront inequality where it finds it, who is willing to be a voice for all experiences of disability and who can move away from individual needs to universal rights for all.