RECOGNITION and eDEMOCRACY for MEMBERS of the COMMUNITY with LIFELONG DISABILITY

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RECOGNITION and eDEMOCRACY for MEMBERS of the
COMMUNITY with LIFELONG DISABILITY

• Judith Molka-Danielsen, PhD
• j.molka-danielsen_at_himolde.no
• Susan Balandin, PhD
• susan.balandin_at_himolde.no

ePart of DEXA September 1st-4th 2009 Linz Austria
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One challenge resolving a difference in
perception

• Disabled peoples 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)

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Societys 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.
  http//www.euractiv.com/en/socialeurope/eu-limited
  -pledge-disabled-rights/article-162931
• 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?)

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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
  2005701) 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.

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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.

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Norway Percentage with access to different ICT,
by household type and household income. 2nd
quarter 2008 (Refhttp//www.ssb.no/ikthus_en/tab-
2008-09-18-01-en.html
Type PC Internet
All households 86 84
HH w/children 98 98
HH w/o children 80 77
HH income NOK 1000
lt200 72 69
200-399 73 72
400-599 94 89
gt600 97 97
 Degree of disability 2004
 Degree of disability Total income (NOK) 1000
All disability pensioners 200
15-49 disabled 331
50-69 disabled 255
70-99 disabled 183
100 disabled 191
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Norway Population aged 15-66, total, and persons
with disabilities, by labour force status, age
and sex. 2nd quarter 2008. 1 000 and as per cent
of all in each group. http//www.ssb.no/english/su
bjects/06/01/akutu_en/tab-2008-09-01-02-en.html
Population Population Employed Employed Unemployed Unemployed Not in the labour force 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 3 234 555 2 501 251 72 16 661 288
PER CENT 100,0 17,2 77,3 45,3 2,2 2,9 20,4 51,9
                 
15-24 100,0 8,3 59,5 48,4 5,4 7,8 35,1 43,9
25-39 100,0 9,5 86,7 51,6 2,2 5,5 11,1 42,9
40-54 100,0 18,5 87,1 53,6 1,3 2,7 11,6 43,7
55-59 100,0 30,7 78,9 44,8 1,0 1,1 20,1 54,1
60-66 100,0 38,0 53,7 28,9 0,4 0,6 45,9 70,5
                 
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How do persons with a disability engage in local
politics?

• NIBR Report 20061 (Hanssen Winsvold) Hanssen
  and Winsvold explored the following major issues
  
• Do disabled engage in local politics by means of
  modern electronic communication (via ICT)
• 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
• 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.

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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.

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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. http//www.un.org/disabilities/
  documents/ppt/crpdbasics.ppt
• The convention was ratified at the UN general
  assembly on 13. December 2006. Norway signed
  together with 80 other states and the EU on 30.
  March 2007. In August 2008, there were 129 states
  plus EU that had signed and 34 states that had
  ratified. Norway has only signed (2007).
  http//www.un.org/disabilities/countries.asp?navi
  d12pid166
• General information from Norwegian government
  http//www.regjeringen.no/nb/dep/bld/tema/nedsatt_
  funksjonsevne/fn-konvensjon-om-rettighetene-til-me
  nnes.html?id511768epslanguageNO

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New Norwegian Disability Discrimination and
Accessibility Act - in force 1 Jan 2009
Original Norwegian Text Approximate Translation or Summary
Lov om forbud mot diskriminering på grunn av nedsatt funksjonsevne (diskriminerings- og tilgjengelighetsloven) http//www.lovdata.no/all/tl-20080620-042-0.html11 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.
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New Norwegian Disability Discrimination and
Accessibility Act - in force 1 Jan 2009
Original Norwegian Text Approximate 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 2021. 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 2021. This duty does not apply to ICT solutions covered by other legislation.
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New Norwegian Disability Discrimination and
Accessibility Act - in force 1 Jan 2009
Original Norwegian Text Approximate 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.
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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, 2021.
• 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 2010.
• 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
• http//www.halogen.no/academy/fagartikler/universe
  ll-tilgjengelighet-for-ikt-rettet-mot-allmenheten/
  
• http//www.helsedirektoratet.no/deltasenteret/utfo
  rdringer_og_muligheter_innen_universell_utforming_
  av_ikt_363684

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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, www.ssb.no, 2008) 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
  2010-2011, 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.

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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
  7000-62005. 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.
• Reference http//www.tiresias.org/accessible_ict/
  what.htm

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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.