UN report on public decision-making / by Erich Kofmel

If you haven't done so yet, we strongly encourage you to read the report by the United Nations Special Rapporteur on the rights of persons with disabilities, submitted to the March 2016 session of the UN Human Rights Council, on the participation of persons with disabilities in political and public life and decision-making.

It is available in all six UN languages (including English, French, Spanish, and Arabic) here:


Autistic Minority International made a written submission during the consultation phase, and we are glad to note that there are a number of explicit references to autistic persons in the report:

"37. The Convention on the Rights of Persons with Disabilities has accelerated the process of establishing organizations of self-advocates with intellectual disabilities, of autistic persons and of other individuals who may need extensive support to express their positions. Organizations of parents and relatives of persons requiring support have often played a role in providing such support and one can find organizations that include parents as well as self-advocates. The role of parents in such organizations should increasingly move towards the provision of support, with self-advocates in full control.

"38. It is important to distinguish between organizations 'of' persons with disabilities, which are led by persons with disabilities, and organizations 'for' persons with disabilities, which are usually non-profit organizations that provide services to persons with disabilities and often also advocate on their behalf. This advocacy role needs to be carefully assessed, as it can easily happen that advocates seek to ensure the continuity of services, regardless of whether or not they are human rights-based or the preferred options of persons with disabilities. The failure of States to acknowledge the distinction between organizations 'of' and 'for' persons with disabilities lies at the heart of historical tensions between the two types of organization, such as those around legitimacy, choice and control, and the allocation of resources. In their pursuit of genuine participation by persons with disabilities in decision-making processes, States need to ensure that the will and preferences of persons with disabilities themselves are given priority. [...]

"60. States must promote the participation of persons with disabilities across all population groups, including those historically discriminated against or disadvantaged, such as indigenous people, poor or rural-based persons, lesbian, gay, bisexual, transgender and intersex persons, and others. States must also ensure that the voices of persons with disabilities from throughout the life cycle are heard (particularly those of children, adolescents and older persons) and from across the whole range of impairments and experiences of disability (including deaf persons, autistic persons, deafblind persons, and persons with psychosocial or intellectual disabilities). [...]

"69. As certain groups of persons with disabilities face additional challenges to their participation in public life, they may be inadequately represented by existing representative organizations in a given country. Accordingly, States must not only encourage and support the participation of persons with disabilities from disadvantaged groups in representative organizations of persons with disabilities, but also show flexibility and establish consultative mechanisms to enable the participation of all persons with disabilities. This is particularly important for persons with multiple impairments, persons with intellectual or psychosocial disabilities, autistic persons and deafblind persons. States must devise outreach strategies aimed at ensuring the participation of these groups. The broad inclusion of persons with disabilities throughout the public decision-making process is one of the most effective tools for States to develop truly inclusive and diverse societies."

In the press release accompanying the report, the Special Rapporteur highlighted the need for autistic self-advocacy organizations once more:

"In her report, Ms Devandas Aguilar urges all governments to engage in direct consultations with organizations of people with disabilities, rather than only those that advocate on their behalf. 'States must prioritize the participation of organizations led and operated by persons with disabilities and support their establishment and functioning,' she explained.

"The Special Rapporteur stressed the importance of engaging with groups who need considerable support, such as autistic people and those with intellectual or psychosocial disabilities."


Of course, pretty much everything in this report is relevant to the establishing and running of organizations by and for autistic persons and should be used by autistic self-advocates at all levels (local, national, regional, and global) to pressure governments for inclusion in decision-making processes, provision of funding to self-advocacy organizations, and so on.