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General Introduction

After experiencing a spinal cord Injury (SCI) the person not only has to deal with regaining body functions and learn strategies to adapt to activity limitations, the person is often confronted with physical and social accessibility issues as well as loss of income or questions of cost coverage for medical/rehabilitative interventions. As a person with disability, being aware of his or her rights and how to navigate through the legal and social security systems could help optimise the person’s community reintegration after SCI.

Rights of Persons with Disability

Globally, the entitlement of social security is incorporated in the Universal Declaration of Human Rights of 19481 as well as in the International Covenant on Economic, Social and Cultural Rights of 1966.2 These declarations do not explicitly mention persons with disabilities, since they apply to all human beings irrespective of the presence of disability. To address the specific situation of persons with disability, the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly in 2006.3 The CRPD lays out the basic rights of persons with disability around the world, emphasising autonomy and self-determination. Accessibility is also a central theme throughout the CRPD. An optional protocol to the CRPD was also adopted in 2008 that recognises the role of the Committee on the Rights of Persons with Disabilities to hear individual complaints.

One of 173 countries (as of May 2017) Switzerland ratified the CRPD in April 2014. This obliges Switzerland to enact specific legislation that grant persons with disability the rights outlined in the CPRD.3

Role of Legislation

Laws play an important role in addressing some issues faced by persons with disability, including persons living with SCI. It is also a tool that can be used to implement social and disability policy. Disability policy, as a part of social policy, is implemented through laws that define the current understanding of disability and outline the rights granted to persons with disability. These laws can be differentiated between social security legislation and anti-discrimination legislation. While social security legislation generally focuses on outlining the provisions for financial benefits, anti-discrimination legislation aims to ensure fair opportunities and equality (including addressing accessibility barriers that deny equality). In Switzerland these two types of legislation also dictate two different definitions of disability; see box 1.

Box 1 | Disability Definitions in Switzerland

“Disability” or “invalidity” is defined in Swiss social security legislation General Part of the Federal Social Insurance Law (ATSG) Article 8 as “a probable permanent or long-term complete or partial incapacity to work” (unofficial translation from the German),4, while in Swiss anti-discrimination legislation, the person with disability is defined in the Disability Discrimination Act (BehiG) Article 2 as “a person, for whom a probable long-term physical, mental or psychological impairment makes it difficult or impossible to perform daily activities, to maintain social contacts, to move about, to engage in education and training or gainful employment” (unofficial translation from German)5

In addition to defining disability, legislation can also specify the rights persons with disability have. In Switzerland, for example, the Swiss Constitution provides the legal basis to ensure social justice, social equality and social security for all persons in Switzerland – with or without disability.{cs20-fn6 } There is also specific legislation for various aspects of social security and for persons with disability. For example, the Federal Law on Disability Insurance (IVG) outlines, among other things, the provisions for facilitating return-to-work/work participation of persons with disability, e.g. vocational re-training or assistive devices.7{cs20-fn8 }, and the BehiG ensures accessible public buildings and transportation.5

""... most laypeople are unaware of [laws pertaining to persons with disability] until they need to apply them – that is, when they themselves become disabled.""

Although these laws are publically available on the website of the Swiss Confederation, most laypeople are unaware of them until they need to apply them – that is, when they themselves become disabled. For persons with SCI, becoming a person with disability is often sudden and unexpected. They are suddenly faced with the impairments of functioning, possible loss of income and mounting financial burden of disability, and uncertainty about living independently in the community. To help address these issues, it is essential that persons with SCI gain knowledge about their rights as a person with disability, what services and interventions they are entitled to, and in general how to navigate around the social and legal systems. As stated in the Preamble of the CRPD: “Recognizing the importance of accessibility to...information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms”.3 Accordingly, the International Perspectives on Spinal Cord Injury (IPSCI) recommends empowering persons with SCI and their families with necessary information so that “they can take responsibility for their own healthcare after discharge”.9

""...IPSCI recommends empowering persons with SCI and their families with necessary information so that ‘they can take responsibility for their own healthcare after discharge’.""

This case study of Ben provides insight into the challenges related to legal and social security issues that a person with SCI experiences during rehabilitation. It also illustrates that gaining knowledge about one’s own rights could be demanding as much as empowering, and how the implementation of disability policy contributes to optimising participation of persons with SCI.