Inquiry into the Accessibility of Research Technology

Note: this post is an extension of an earlier post Disability Researching

image of a Railroad punch card computer 1967

It’s difficult for me to conceive of a world where research was conducted by hand. I’ve heard stories of interview transcripts housed in enormous filing cabinets, and statistical analysis conducted with carefully ordered punch cards on machines that could fill an entire building. But being a member of the information age, it often doesn’t occur to me the fantastic benefit my work receives with the aid of the Internet and computers.

However, regardless of the power or the potential of this technology to make my life as a researcher a bit less process-laden. It still falls short of providing that facility on a universal scale. The latest versions of popular research software programs (e.g. Nvivo, SPSS, SAS) are incredible examples of how far our abilities have come in our capacity to examine the world’s problems. From sociology to microbiology to archaeology our level of scientific discourse is enabled by these tools.

Gaining the knowledge and ability to use these tools can be a challenge. But when the design of these tools leave out persons who have the knowledge and abilities but lack the sensory capacity to use these tools, we limit not only the chances of those persons to contribute to their own development but their chances to contribute to the development of knowledge and science.

These observations are based both on my own experience using this technology as a person without a disability, but also on the state of the existing research (of which practically none exists concerning accessible research technology). So I think if we value the contribution of science, and if it is important that its role in our society reflects the diversity of the human experience. Then it is critically important to design these tools we use to examine our world to include persons with disabilities.

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Despite legislation, disability rights not realised in practice

FRA Press Release Vienna, 7 June 2012

Discrimination against people with intellectual disabilities and people with mental health problems persists despite the ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD) by the EU and 21 Member States. Two new FRA reports capture the experiences of exclusion and discrimination of people with intellectual disabilities or mental health problems. The reports highlight the need to move from institutional to community-based living arrangements and to reformulate laws and policies to make them more inclusive. Both reports are presented at an international conference on “Autonomy and inclusion” in Copenhagen on 7-8 June 2012.

Much still remains to be done to realise the rights of Europe’s 80 million people with disabilities. The CRPD sets out an ambitious path to improve the situation of people with disabilities. The challenge now is to implement it,” said FRA Director, Morten Kjaerum. “FRA’s research illustrates that the fundamental rights of people with disabilities are lagging behind legal guarantees, particularly as austerity measures begin to bite. This work provides the basis for discussions of practical measures that will make a difference to their daily lives.

1) Report: “Choice and control: the right to independent living” The research looked into the experiences of independent living of people with intellectual disabilities and people with mental health problems in nine EU Member States, and found that they often face difficulties in their daily lives. The main problems include:

Laws and policies that do not enable people with disabilities to live independently;

Negative attitudes and prejudice that do not recognise the contribution people with disabilities make to society;

Lack of employment opportunities resulting in reliance on state support and benefits.

The report shows that for independent living to be successful, deinstitutionalisation needs to be coupled with social policy reform in education, healthcare, employment and personal support options. People with disabilities have to be involved in the development of these policies. 

“People at the ministries and authorities should talk to people like me when they develop legislation and policy. They should ask us what we want and need, and not make our lives more difficult.” (Man, 32, Bulgaria, interviewed during the research)

2) Report: Involuntary placement and involuntary treatment of persons with mental health problems The second FRA report underlines that the laws regulating involuntary placement or treatment must consider fundamental rights in accordance with the CRPD. Although all EU Member States have minimum safeguards in place, FRA fieldwork points to overwhelmingly negative experiences of involuntary placement or treatment due to a:

Lack of information and discussion about the process and their situation when they could have been consulted leading to a lack of control over what was happening to them;

Feeling of fear and humiliation during treatment. Voluntary placement and treatments were viewed more positively.

Both FRA reports provide a basis for EU and Member States’ discussions on how to protect and fulfil the rights of people with disabilities, and can be used to support them in fulfilling their obligations under the CRPD. For the full reports see:

Involuntary placement and involuntary treatment of persons with mental health problems (http://fra.europa.eu/fraWebsite/attachments/FRA-2012-involuntary-placement-treatment_EN.pdf )

 Choice and control: the right to independent living – Experiences of persons with intellectual disabilities and persons with mental health problems in nine EU Member States (http://fra.europa.eu/fraWebsite/attachments/FRA-2012-choice-and-control_EN.pdf )

Notes to the editors:

The UN Convention on the Rights of Persons with Disabilities (CRPD), which entered into force in May 2008 has since been ratified by 21 EU Member States and the EU itself. This is the first legally binding international human rights instrument to which the EU is party. The CRPD requires signatories, among other responsibilities, to make independent living a reality for all people with disabilities, and to support them participating in the community on an equal basis with everyone else.

Mental health problems can affect a person’s thoughts, body, feelings, and behaviour. They include depression, bipolar disorder (manic-depressive illness), attention-deficit/ hyperactivity disorder, anxiety disorders, eating disorders, schizophrenia, and conduct disorder.

Intellectual disability is a permanent condition characterised by significantly lower than average intellectual ability, resulting in limitations in intellectual functioning and adaptive behaviour. It is usually present from birth or develops before the age of 18. Examples include: Asperger Syndrome, autism and Down Syndrome.

The nine countries covered in the Choice and control report are: Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK.

The Involuntary placement and treatment report provides a comparative law analysis of 27 EU Member States along with personal experiences from the nine countries covered in the Choice and Control report.

The European Union Agency for Fundamental Rights (FRA) is mandated to provide evidence-based advice to EU and national decision makers, thereby contributing to more informed, solidly framed and contextualised debates and policies on fundamental rights.

For further information please contact the FRA Media Team E-mail: media@fra.europa.eu Tel.: +43 1 580 30 642

A Conversation about Apples

In the IT world, I think there are basically four philosophies

  1. The vegetarian: Owns an Apple because they are shiny and healthy
  2. The carnivore: Owns a Windows PC because they can be taken apart, ground up and eaten with a bit of mustard
  3. The omnivore: Owns an iPad, Android phone, Windows desktop and Macbook and consumes them all simultaneously
  4. The vegan: Lives on Linux alone

""Of course this is an exceedingly inappropriate stereotypical and mostly useless typology, but the point is that persons who love technology typically have very strong feelings about its purpose, function and role in their life. Sure there are cases of ambivalence, but people who are passionate about technology can usually find one faction or another to ally themselves with.

Where this breaks down is with accessible technology. I’m remiss to say that people aren’t passionate about accessible technology, but I’ve yet to see an online forum that captures the vindication, dogmatism and zealousness that is sometimes seen on technology blogs and user forums. Now granted, this may be a good thing since creating accessible technology is something of a collaborative effort, bringing in people who create the technology, people that use the technology, and people that would like to use the technology.

Now this limited passion approach for creating accessible technology may be due to the lack of a villain. There’s no one touting the awesomeness of inaccessible or unusable technology. There’s no one saying “Hey check out my new phone, it took me six weeks and I had to read the entire 4,682 page manual to figure out how to make a phone call!” In fact, I think most technology producers are aware of accessibility, especially in terms of usability. But I think what’s missing is the rivalry, or the belief that my technology is better than yours because EVERYONE can use it. And perhaps that’s why Apple has become a leader in this field, because part of their belief structure revolves around using elegant solutions to solve complex problems. It just happens that those solutions are in the form of accessible computers and phones.

Note: this post was inspired at least partially by the presentation by Simon Sinek for TED

“Nothing about Article 33.3 CRPD without us!”

Data collection on the involvement of persons with disabilities

According to Article 33.3 UN CRPD Civil society, in particular persons with disabilities and their representative organizations shall be involved and participate fully in the monitoring process of the Convention. Article 4.3 UN CRPD refers to the importance of involving persons with disabilities in all policy – and decision making processes concerning issues relating to their lives. Preamble (o) also emphasizes that persons with disabilities should be actively involved in decision-making processes, policies and programmes, including those directly concerning them.

Referring to the paradigm shift and to the slogan “Nothing about us without us!” the effective and active involvement of persons with disabilities should be considered as one of the key elements of successful implementation of the CRPD. Most Member States are still in the process of establishing their Article 33.2 framework to promote, protect and monitor the implementation of the CRPD therefore it is very important to ensure the participation of DPOs from the very first stage. Our knowledge is very limited on what kind of initiatives or good practices are taking place in the Member States in order to provide active involvement instead of formal consultations for persons with disabilities.

The aim of this research is to collect qualitative data directly from members of the disability movement on the current National level participation and to explore key elements of effective and active involvement.

Keeping in mind that no one, but persons with disabilities can contribute the best in designing indicators which could measure effectiveness of their participation, the concept and structure of the questionnaire was developed in an inclusive way in close consultation with the disability movement. The questionnaire is now open to answer until 29 June 2012. The study which will analyze contribution received from members of the disability movement could be useful in terms of exchanging experiences on good practices and also to discover common struggles and gaps in the National level involvement.
      

The questionnaire is available on the website of the European Disability Forum: http://www.edf-feph.org/Page_Generale.asp?DocID=13854&thebloc=30214

If you feel your voice should be taken into account, please answer the questionnaire and send it back to one of the following e-mail addresses by 29 June:

magdi.birtha@edf-feph.orgmagdolna.birtha@nuigalway.ie

Thank you for your cooperation. 

Invitation to the DREAM Network-Wide Event in Madrid, Spain: Friday 15 June 2012

The DREAM Initial Training Network and Fundosa Technosite would like to invite you to the  DREAM Network-Wide Event on Cost-Benefit Analysis on Disability: Approaches, Practices and Impact of the European Union’s Policy on eAccessibility.

Topics covered will include approaches and results of cost benefit analysis studies, accessibility policy and practice in the banking sector, key aspects of costs and benefits in accessibility and policy traits of the UN CRPD and the DREAM network.

Guest speakers include Mr. Jesus Hernandez, Director of Universal Accessibility at ONCE Foundation; Ms. Blanca Alcanda, CEO at Technosite; Dr. Jose Angel Martinez Usero, Director of International Projects and Relations at Technosite; Prof. Gerard Quinn, Project Coordinator of DREAM ITN Network; Prof. Thea van der Geest, University of Twente; and and Mr. Josep Marti Salat, ATM business development manager at “la Caixa”.

Time:
The morning of 15 of June 2012

RSVP:
If you are interested in participating and would like to receive a full programme please send an email to: dream@technosite.es before 12 June 2012 including your name, position and organization.

Invitation to submit articles to the European Yearbook of Disability Law

The editors of the European Yearbook of Disability Law welcome submissions of articles for inclusion in volume 5 of the series. The Yearbook contains a series of articles on current challenges and developments from analysts and academics working in the field of disability law, and is a highly-regarded, peer-reviewed journal in this field.

The Yearbook aims to provide critical insight into the evolution of European disability law and policy and offers analysis of pressing challenges in a broad range of fields. DREAM ESRs are ideally placed to submit articles to the Yearbook, given the Network’s work in the area of European disability law and policy reform in light of the UN CRPD. Previous articles included in the Yearbook have addressed topics such as: reasonable accommodation, inclusive education, digital and telecommunication accessibility, multiple discrimination, the implementation and monitoring of the UN CRPD, and the intersectionality of the UN CRPD, to name but a few areas discussed.

Articles may address for example, aspects of European Union or Council of Europe law, or undertake an analysis of disability law across European countries.

The next deadline for submission of articles is 28 February 2013, with a view to publication at the end of 2013. Authors are encouraged to contact a member of the editorial board to ensure their article falls within the scope of the Yearbook. All suitable articles are subject to peer review. Articles should be between 10 000 to 12 000 words in length, and authors are asked to provide an abstract of 150-200 words. Submission of an article will be taken to mean that the manuscript has not been published, accepted or submitted elsewhere.

If you are interested in submitting an article to Volume 5 of the Yearbook, please contact one of the editors:

Professor Lisa Waddington Email : lisa.waddington [at] maastrichtuniversity.nl
Professor Gerard Quinn Email : gerard.quinn [at] nuigalway.ie
Dr. Eilionóir Flynn Email : eilionoir.flynn [at] nuigalway.ie

**Article written by Prof. Lisa Waddington, Dr. Eilionoir Flynn and Connor Newman**