No Matter How Severe the Disability

People with disabilities, no matter how severe, have the same rights as everyone to make decisions about their lives–including the right to take risks and to make mistakes.

So says the UN’s Committee on the Rights of Persons with Disabilities in new guidelines recently issued to clarify the terms of an international treaty called the Convention on the Rights of Persons with Disabilities.  At present, 145 countries have ratified the treaty, but not the US.

According to UN committee member Theresia Degener:

Respect for the freedom to make choices should be accorded to all persons with disabilities, no matter how much support they need. . . . People with disabilities, including those with psychosocial or cognitive impairments, must be supported in making decisions, and not have decisions made for them, even when it is thought to be in their ‘best interests’.

The committee noted that there is a general misunderstanding about the obligations of nations that have signed the treaty ensuring equal rights for people with disabilities, and because of this misunderstanding, many people are denied legal capacity and fundamental rights, such as the right to vote and the right to marry and have a family.

They highlighted the difference between “supported decision-making”, where a person is assisted and supported in making his or her own decisions, and “substituted decision-making”, where others make choices on the person’s behalf, even when those choices are very well-intended.  Making choices on a person’s behalf is still common, such as under guardianships or mental health laws that permit forced treatment.

Even so, the panel recognized that discerning what an individual wants is sometimes not possible, and in such cases, priority should be given to the “best interpretation of their will and preference,” not what’s regarded as being in their “best interest.”

The committee went on to stress the important role that accessibility plays in “supported decision-making”, saying that in order for people to exercise their equal rights and freedoms, they have to have accessible transportation, information and communication, physical environment, and services.  They outlined the following responsibilities for increasing accessibility for nations that have ratified the treaty:

• Universality.  Goods, products and services that are provided to the public, regardless of whether they’re offered by a public or private entity, must be accessible to everyone.
• New goods.  All new products, facilities, infrastructure, technology and services should be designed to be fully accessible by persons with disabilities.
• Existing barriers.  Nations should provide sufficient resources and set definite time frames to remove existing barriers, and austerity measures are no excuse failing to ensure gradual progress.

The United States signed the treaty in 2009, but Senate approval is needed in order to make participation official, and so far, efforts to ratify it have been unsuccessful.