RECOGNITION and eDEMOCRACY for MEMBERS of the COMMUNITY with LIFELONG DISABILITY Judith Molka-Danielsen, PhD Susan Balandin, PhD ePart of DEXA September 1st-4th 2009 Linz Austria

One challenge: resolving a difference in perception “Disabled people’s reliance on others for help with the tasks of daily living is confused with dependence whereas, according to the independent living movement, independence stems from the ability to control the assistance required.” (Lister, 2007)

Society’s Questions Who do we recognize? Legislation is slow to appear –US Rehabilitation Act of 1973 was first major US law to grant persons with disability such basic civil rights. –Rights of disabled person to the same fundamental rights as all other people, including the same civil and political rights (United Nations, 1975). –EU signs human-rights charter 30 March 2007 on the Rights of Persons with Disabilities. But does not sign the protocal for complaints procedure. Who are we prepared to redistribute (rights)? –Access to information - Rehabilitation Act (2001) to address rights of access to information. (not implemented) –Ability to voice opinion in social context. (How?)

Democratic Models Held (2006/7) - “participatory democracy” focus on the significance of peoples’ direct involvement Beethams (2005) - focus on the value of political participation and highlights the possibilities in digital democracy But, does ICT help persons with disability? Democracy Committee of the Nordic Council of Ministers (Demokratiutvalget, Sluttrapport ANP 2005:701) report on the danger of “digital divides” & have revealed that ICT first and foremost is a supplementary tool for the few that already are politically active, while the groups that are not already included in political work, do not use ICT to become more politically active.

Possible Barriers to Political Activity Lower average annual income (than the general population) – that prevents access to ICT. Physical disability that interferes with communication (limited sight, hearing, motor control). Learning disability – that can be related to fewer years of formal education or cognitive disability. Limited former experience with ICT due to the above reasons.

Norway: Percentage with access to different ICT, by household type and household income. 2nd quarter 2008 (Ref: TypePCInternet All households8684 HH w/children98 HH w/o children8077 HH income NOK 1000 < >60097 Degree of disability 2004 Total income (NOK) 1000 All disability pensioners % disabled % disabled % disabled % disabled191

PopulationEmployedUnemployed Not in the labour force Age and sex Total (1) Disabled (2) Total (3) Disabled (4) Total (5) Disabled (6) Total (7) Disabled (8) TOTAL PER CENT 100,017,277,345,32,22,920,451, ,08,359,548,45,47,835,143, ,09,586,751,62,25,511,142, ,018,587,153,61,32,711,643, ,030,778,944,81,01,120,154, ,038,053,728,90,40,645,970,5 Norway Population aged 15-66, total, and persons with disabilities, by labour force status, age and sex. 2nd quarter and as per cent of all in each group.

How do persons with a disability engage in local politics? NIBR Report 2006:1 (Hanssen & Winsvold) Hanssen and Winsvold explored the following major issues: 1.Do disabled engage in local politics by means of modern electronic communication (via ICT); 2.What do disabled use ICT for with a focus on the use of municipal home pages; that is are there differences between the disabled and general public use of ICT for political ends; and lastly 3.What can local political administrations do to ensure equal participation in local politics for all parties? Good questions – however, response rates were low and not representative of persons over 55 years.

How can disabled persons be given a voice? e-Government policies through e-Democracy channels of communication must address issues of cultural misrecognition and material inequalities. (Lister, 2007; Goodlad and Ridell 2005; Witcher 2005). 1. Government regulations & policies must support the opinion of a disabled person on equal footing with those who do not have a disability. 2. Government must ensure that there are low cost ways to access government information and services. This is achieved through: conventions, laws, standards leading to compliant implementations and statistics play a role in evaluation.

UN convention The Convention marks a ‘paradigm shift’ in attitudes and approaches to persons with disabilities. Persons with disabilities are not viewed as "objects" of charity, medical treatment and social protection; rather as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society. The Convention gives universal recognition to the dignity of persons with disabilities. The convention was ratified at the UN general assembly on 13. December Norway signed together with 80 other states and the EU on 30. March In August 2008, there were 129 states plus EU that had signed and 34 states that had ratified. Norway has only signed (2007). General information from Norwegian government: mennes.html?id=511768&epslanguage=NO mennes.html?id=511768&epslanguage=NO

New Norwegian Disability Discrimination and Accessibility Act - in force 1 Jan 2009 Original Norwegian TextApproximate Translation or Summary Lov om forbud mot diskriminering på grunn av nedsatt funksjonsevne (diskriminerings- og tilgjengelighetsloven) Disability Discrimination and Accessibility Act 2008 § 11. Plikt til universell utforming av informasjons- og kommunikasjonsteknologi (IKT) Med informasjons- og kommunikasjonsteknologi (IKT) menes teknologi og systemer av teknologi som anvendes til å uttrykke, skape, omdanne, utveksle, lagre, mangfoldiggjøre og publisere informasjon, eller som på annen måte gjør informasjon anvendbar. Paragraph 11 – Duty of universal adaptation or development of ICT ICT is defined as technology and systems of technology which are applied to express, create, transform, exchange, store, disseminate and publish information, or which in another manner makes information usable.

New Norwegian Disability Discrimination and Accessibility Act - in force 1 Jan 2009 Original Norwegian TextApproximate Translation or Summary Nye IKT-løsninger som underbygger virksomhetens alminnelige funksjoner, og som er hovedløsninger rettet mot eller stillet til rådighet for allmennheten, skal være universelt utformet fra og med 1. juli 2011, men likevel tidligst tolv måneder etter at det foreligger standarder eller retningslinjer for innholdet i plikten. For eksisterende IKT-løsninger gjelder plikten fra 1. januar Plikten omfatter ikke IKT-løsninger der utformingen reguleres av annen lovgivning. New ICT solutions which: (a) underpin or support the general functions of an enterprise, and (b) are the main solutions targeting or made available to the general public, are required to be of universal design as of 1 July 2011 PROVIDED THAT this requirement shall not apply earlier than 12 months after standards or guidelines on the nature and contents of this duty have become available. For existing ICT solutions this duty applies from 1 January This duty does not apply to ICT solutions covered by other legislation.

New Norwegian Disability Discrimination and Accessibility Act - in force 1 Jan 2009 Original Norwegian TextApproximate Translation or Summary Organet utpekt etter § 16 annet ledd kan gi dispensasjon fra plikten etter annet ledd dersom det foreligger særlig tungtveiende grunner. Kongen skal gi forskrifter med nærmere bestemmelser om avgrensning av virkeområdet og innholdet i plikten til universell utforming etter denne paragrafen. The relevant authority may grant dispensation from this duty where there exists especially compelling grounds. Regulations will be issued detailing the extent of the applicable areas of the duty of universal design, and the contents of such duty.

How do standards play a role? The Norwegian law is to apply to both public and private sectors. New solutions that are “main solutions” or “systems” must be universally designed from July 1, 2011, and existing systems from January 1, But the questions remain, what are “main solutions” and what is “new ICT”? Standards are needed: The Directorate for Government and ICT (DIFI) is the regulator for the new law. Norge.no-miljøet that has evaluated government web sites for “quality on net” since 2004 is a part of DIFI. Specifications, rules and standards are to be written, sent out for hearing and finalized by summer Failure to comply with “quality on net” has been subject to soft sanctions, but failure to comply with the new law can be subject to hard sanctions. We still do not know what those are. References: allmenheten/ allmenheten/ av_ikt_363684http:// av_ikt_363684

Standards and Evaluation Support standard approaches that will aid disabled persons to express their opinions and participate actively within their communities. –W3C WCAG 2.0 – Web Content Accessibility Guidelines released on December 10th 2008 will help web designers to build sites that can be read and understood by persons with blindness, hearing impairments, physical impairments and cognitive disabilities such as short-term memory impairment or seizure disorders. Comprehensive Statistics – The European Model on Disability and Social Integration (Jorun Ramm & Berit Otnes, ) says The Nordic Cooperation on Disability (NSH) has announced a need for comparable statistics on people with disabilities across Nordic countries. The European Disability and Social Integration Module is to be implemented in the EU countries during , will be a new approach to study disability. It will collect and analyze data with emphasis activity limitations and participation restriction, in addition to individual limitations.

Implementation – Inclusive Design Accessibility can be viewed as the "ability to access" the functionality, and possible benefit, of some system or entity. Accessibility is often used to focus on people with disabilities and their right of access to entities, often through use of assistive technology. Universal design is a term originating in the USA and underpinned by 7 principles set out by architect and designer Ron Mace. “barrier free” Design for All is a process whereby designers, manufacturers and service providers ensure that their products and environments address users irrespective of their age or ability. It aims to include the needs of people who are currently excluded or marginalized by mainstream design practices and links directly to the concept of an inclusive society. The British Standards Institute (British Standard :2005. Design management systems - Managing inclusive design - Guide) defines Inclusive design as "The design of mainstream products and/or services that are accessible to, and usable by, as many people as reasonably possible... without the need for special adaptation or specialized design." Inclusive design should be embedded within the design and development process.British Standard :2005. Design management systems - Managing inclusive design - Guide Reference:

Ongoing research Further research in this area is needed. In particular, – The general attitudes and awareness in society are hard to change and require learning. We will explore what support are needed to allow persons with lifelong disability to access and use a 3D virtual world for a variety of social activities such as local political engagement. We will study the design process for inclusion of persons with lifelong disability in the design of social meeting spaces (such as the 3D virtual spaces) that may be used for social and political interactions. Our research using the 3D virtual world of Second Life will study the attitudes and understanding of a student segment towards persons with disabilities.