Bach versus Beethoven

Probably you have been asked, at least once, if you had to choose would you rather be blind or deaf? No doubt you made a quick scan in your mind of the pros and cons of either option to conclude that both are terrible: you would feel disabled. But what if you are born deaf and never have known what it is like to hear the birds sing, or to overhear somebody else’s conversations in public (and also not to be bothered by them). Or if you are born blind and have never seen your mother’s face but recall very vividly the smell of her perfume. You probably would not feel disabled. So would you be then?

Last April 12, the Dutch Senate ratified the United Nation Convention on the Rights of Persons with Disabilities CRPD . A historical day for many people with impairment, their friends, families, and people working for interest groups. I have noticed that many people are unfamiliar with the existence of this convention, the changes that it requires, and the battle that was made by people with impairment to turn a Dutch signature in 2007 into ratification in 2016. The purpose of this blog is to offer you insight in the content and meaning of the convention. It is not only institutional change that is necessary for the convention to succeed, it also requires a social responsibility: a change of the current mind-set in society and held assumptions about living with impairment that might let people feel disabled.

Medical vs. social model

Disability scholars work with theoretical models of disability to examine and reflect on the implications of living with impairment. Disabilities have long been studied from a medical perspective, in which ‘the disability’ is located in the individual body. It regards people as disabled when they have a physical impairment that limits them from participation in society. Critics assert that the medical point of view focuses too much on reducing or ‘fixing’ impairment and assumes that people with impairment cannot lead a fulfilling life. From this criticism, the social model of disability arose in the 1980s. This model localizes disability not in a person, but in the mechanisms of society that do not meet the needs of people with impairment and make them feel disabled. The medical model and the social model now coexist: the first remains relevant for medical researchers, but for companies aiming to improve their accessibility the latter is.

In 2006, the United Nations (UN) adapted the social viewpoint as basis for the CRPD that has been operating since 2008. Human rights for people with impairment are included in existing human rights conventions theoretically, but often not achieved in practice. By means of the CRPD the UN aspires to guarantee the rights of persons with impairment, based on eight general principles Article 3: respect for inherent dignity and individual autonomy; non-discrimination; full and effective participation in society; respect for/ acceptance of people with disabilities as part of human diversity; equality of opportunity; accessibility to the physical environment, transportation, information and communication; equality between men and women; and respect for evolving capacities of children with disabilities, including the right to preserve their identities.

Substantive equality

For deaf people, for example, the CRPD asserts that sign language must be acknowledged as an official language of the Netherlands (next to Dutch and Frisian are). Deaf people can appeal to their rights as a cultural-linguistic minority, should have access to information and communication (e.g. by captioning, information in sign language, interpreter), and have the right to participate in culture, recreation, and sports ‘on equal terms’. The latter words need closer examination for the convention assumes a substantive equality. Discrimination of people with impairment often arises from a strictly equal approach instead of equality in reality. For example, in museums deaf people can – like every other visitor – participate in guided tours, but there is no equal access to information because deaf people cannot communicate with the guide and do not have the opportunity to take the information s/he gives. The convention counts 50 Articles that describe specific rights and conditions to guarantee these rights. For example, the rights of children with impairment, the right to enjoy liberty and security, and the right to enjoy access to cultural places. But when are equal terms established, and to what extend are modifications and adjustments required?

Article 5.3 states:

“In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.” – What does ‘reasonable accommodation’ mean?

Reasonable accommodation

Reasonable accommodation means necessary and appropriate adjustments that do not impose a disproportionate burden. The criteria for reasonable accommodations depend on the institution, company, and context. For example, the adjustments required from a city hall (e.g. physical accessibility, live assistance from professional sign language interpreters, provision of training for stakeholders on accessibility issues) would be disproportionate for a small Indonesian family-restaurant. Another example, the convention states for sites of national importance or monuments that physical access should be guaranteed as far as possible. To build an elevator in The hiding place of Anne Frank would affect the monument and is thus not reasonable, but the new museum Voorlinden, currently under construction, needs to guarantee physical accessibility.

“Week of accessibility” Leiden, October 2014. Picture: Jeroen Sprangers

On April 12, the Senate accepted two legislative proposals that authorized – almost a decennium after the signature – the ratification and execution of the CRPD. This means that there now, finally is a legal framework in which people with impairment can exercise their rights to reasonable accommodation. Denial of these reasonable adjustments is discrimination.

Although this is a big step in legislation, it is just a small step in reality – and most steps still need to be taken. Institutions and companies need to become aware of the existing mechanisms that are exclusive, and to explore methods for progressively making them inclusive. But beside physical adaptations, we should work progressively to alter the way we think about people with impairment. In April 2014, comedian and journalist Stella Young (1982-2014) stated in her TEDtalk: “Disability does not make you exceptional, but questioning what you think you know about it does.”