Access to Books for Persons with Disabilities

By Abigail Rekas

The past few years has seen a major surge in interest in access to books for persons with disabilities. This seems like a pretty simple proposition - everyone should be able to go to the bookstore and pick up a book they’d like to read. Unfortunately, this isn’t the case, for a number of reasons.  Accessible publishing historically has been an expensive proposition, performed by non-profit charitable organizations. These organizations are frequently working under an exception to copyright law, because they cannot afford to license the right to reproduce the book for such a limited run and do the translation into Braille or record the audio book.

The rise of digital technology has been a game changer for accessible publishing. For the first time it is possible to share a master digital file between organizations for the Braille translation, or audio file, or even new types of accessible books. These accessible books are still being created under exceptions and limitations to copyright.

Exceptions and limitations are a territorial in nature; they only extend as far as the borders of the country that created them. This means that a book created under an exception in country A should not be transmitted to country B, because they may not have the same types of exceptions, and the work may technically be infringing the authors rights.

These new technologies have reinvigorated the debate at the international level over copyright exceptions and limitations and the sharing if accessible books across international borders. There has been movement to create an international copyright treaty that would make exceptions for persons with disabilities mandatory for all signatory states.

There are ongoing negotiations over this topic at the UN World Intellectual Property Organization. There are strong feelings on both sides of the negotiations, from rights holders organizations and disabled persons organizations.

The Centre for Disability Law & Policy at NUI Galway and the National Council for the Blind of Ireland (NCBI) will be hosting a Public Lecture on October 8^th to discuss some of these important issues.

The speakers for the evening include:

Chair: Desmond Kenny, CEO, National Council for the Blind of Ireland

Welcome: Dr Maurice Manning, Chancellor of the National University of Ireland

Introduction: Professor Gerard Quinn, Centre for Disability Law & Policy, National University of Ireland, Galway

Keynote: Professor Justin Hughes, Cardozo Law School, New York, USA, and Senior Advisor to the Undersecretary of Commerce for Intellectual Property.

Respondents:  Professor Eoin O’Dell, School of Law, Trinity College, Dublin & Chair of the Copyright Review Committee of Ireland, Eithne Fitzgerald, Head of Policy and Research, National Disability Authority, Samantha Holman, Irish Copyright Licensing Agency, and Abigail Rekas, EU Marie Curie Fellow (NUI Galway).

Please join us to learn more about copyright and access to books for disabled persons!

Venue: National University of Ireland, 49 Merrion Square, Dublin 2 , (Phelan Room)

Time: 6-7:30 PM

RSVP by October 4th to info.cdlp@nuigalway.ie
Numbers are strictly limited and spaces at the event are offered on a first come, first served basis.

Venue is fully accessible. Please contact us ASAP with any specific accessibility requirements.

To read Prof. Eoin O’Dells blog on this event, please click here.

Trends in Focal Points: Monitoring the CRPD

by Meredith Raley 

As explained previously, Article 33 of the Convention on the Rights of Persons with Disabilities is one of the most innovative and important articles in the Convention, as it has the potential to transform the way that human rights treaties interact with national laws. This potential will only be realised, however, if the framework laid out in Article 33 is effectively established and maintained.  Therefore, it is important to keep track of the progress made by state parties to the Convention, to establish best practices and encourage continual progress. The first component of the Article 33 framework mentioned in the Convention is the focal point.  According to Article 33.1 of the CRPD, “States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention”.  This single sentence does not provide much guidance as to either what the focal point should be, or what duties and functions it should have.

The UN has established some guidelines for the placement of focal points, although they note that, due to the variety of governments around the world, it is impossible to prescribe any particularly specific rules. A few general principles can be outlined, however.  First, the focal should be established at the ministry level in government.  The implementation of the Convention requires action at the most senior levels of government, as well as requiring action in all ministries or departments.  The focal point must be placed high enough within government to ensure all necessary action and cooperation takes place.  While placing the focal point within an existing ministry can make it easier to ensure funding and staff, by taking advantage of structures that already exist, the use of a Health Ministry or similar body is discouraged, as it promotes the medical, rather than social, model of disability. Wherever it is place, a focal point must be able to lead the process of implementation within a state party’s government.  The goal of creating focal points is to ensure that some part of a state party’s government will remain focused on the process of implementation, and therefore avoid the delays and slow progress that have so far been all to common in the implementation of human rights treaties.  The Convention also allows for, and even encourages multiple focal points for federal states or other states that have multiple levels of government, all responsible for some part of implementation.

So far, a few distinct trends have emerged in state parties that have established focal points, and in general, these trends line up with the guidelines provided by the UN and the function and purpose of the focal point.  One popular location for focal points is within already established Ministry level disability rights offices.  This is the case in Canada, with the Office on Disability Issues as well as New Zealand (the Office for Disability Issues) and the UK (The Office for Disability Issues).  In addition, the UK will establish multiple focal points, one within each of the devolved governments of Scotland, Wales and Northern Ireland. Another common location for the focal points is within the Ministry of Social Affairs, or similar ministries.  This is the case in Denmark (Ministry of Social Affairs), Austria (Federal Ministry of Labour, Social Affairs and Consumer Protection), and Germany (The Federal Ministry for Labour and Social Affairs), though Germany, like the UK, will use multiple focal points, with some of the Länder establishing their own focal point, in addition to the one at the national level.

Outside of these trends are countries such as Australia, which has appointed it’s Attorney General’s office and the Department of of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) as joint focal points (see here).  Another example is Ecudaor, which has appointed its Ministry of Justice and Human Rights, working in Coordination with CONDAIS (see here). (Note: CONDAIS is a National Disability Council.  Variations of this acronym are common for National Disability Councils throughout Latin America, and many of them are involved at the focal point level in some way.)  While many of these trends are encouraging, it is important for activists and other promoters of disability rights and human rights more generally to carefully watch the process of appointing and maintaining focal points.  So far, only a small minority of state parties to the CRPD have named focal points, and there is a vast difference between simply naming the body that will serve as the focal point, and actually creating and maintaining a body that can effectively implement a human rights treaty.  While currently the framework of Article 33 only applies to the CRPD, if the process is successful, it could be applied to other areas of human rights.  For all of these reasons, it is important to keep a close watch on developments in this area.

European Court of Human Rights Issues a Landmark Judgment for the Rights of Persons with Disabilities

The Grand Chamber of the European Court of Human Rights (ECtHR) this week delivered a landmark judgment for the rights of persons with psycho-social disabilities and intellectual disabilities in the case of Stanev v Bulgaria.  The Mental Disability Advocacy Center (MDAC) and the Bulgarian Helsinki Committee represented Mr. Stanev in his efforts to bring domestic proceedings and at the ECtHR.  The London-based NGO Interights intervened as a third party in the case.

The Court found a violation of Article 5 (1) of the European Convention on Human Rights (ECHR), finding that the applicant was “detained” in a social care institution, the first time that the Court has made such a finding. As Mr. Stanev was legally unable to challenge or seek compensation for his detention, Articles 5(4) and 5(5) of the ECHR had been violated. The Court also held unanimously that Mr. Stanev had been subjected to degrading treatment in violation of Article 3 of the ECHR by being forced to live for more than seven years in unsanitary and unlivable conditions and that domestic law did not provide him any remedy for such violations. This is the first case in which the Court has found a violation of Article 3 in a social care setting.

The other major issue raised in the case was how the law prohibited Mr. Stanev from challenging restrictions on his legal capacity. Having been placed under partial guardianship, under Bulgarian law he needed his guardian’s consent to initiate such a proceeding, and because of this the Court unanimously found that Mr. Stanev’s right to a fair trial under Article 6 of the ECHR had been violated. In this regard, the Court referred to the growing emphasis that international law places on the legal autonomy of persons with disabilities, stating that it “is also obliged to note the growing importance which international instruments for the protection of people with mental disorders are now attaching to granting them as much legal autonomy as possible”, and goes on to reference the United Nations Convention on the Rights of Persons with Disabilities (Judgment, para. 244).

Lycette Nelson, MDAC Litigation Director stated: 

“Following this judgment, States throughout Europe must end policies and practices that unnecessarily restrict the liberty of thousands of persons with psycho-social disabilities and intellectual disabilities in the provision of social care.  The Grand Chamber judgment is unanimous that consent to such placement is necessary to avoid violating the ECHR. States must develop alternatives to ensure the right to live in the community for all.”

Oliver Lewis MDAC Executive Director responded to the judgment by stating:

“Bulgaria must revise its laws restricting legal capacity to bring them into line with international law and the Court’s judgment, so that people can be supported to make their own decisions, rather than having their right to make decisions stripped from them”.

The judgment is available here, and the Court’s press release of the judgment is here.

Seminar Series on the UN Disability Convention

The Scottish Human Rights Commission has begun to host online seminars on the CRPD.  The rationale for holding the seminars is that there is promote accessible information on the CRPD and how it relates to persons lived experiences.  Seminar 1: The first seminar examined disability equality and human rights in the context of public spending cuts and welfare reform.  Each seminar runs for an hour and is scheduled 12 -1pm – so that they can be viewed during lunchtime…  The first seminar ran on Monday 12 December 2011 and examined Rights in a Recession.  Seminar 2: The next seminar is scheduled for 16 January 2012 and is entitled “Getting Justice”.  The guest speaker will be from the Legal Services Agency and the seminar will cover some things disabled people have already told the Commission’s about access to justice - such as concerns from learning disabled people about using and accessing the court system, fears about reporting harassment and alternatives to court action - then the seminar will outline what the Convention says about access to justice and about how the Convention could be used in Scotland.  You can join the next live seminar: http://www.crpdscotlandseminar.com/gettingjustice.htm 

Seminar 3: 13 February 2012: Independent Living

Seminar 4: 12 March 2012: Children and Young People

For some information on viewing and participating in these seminars see here.



Seminar 1 

The Death of Human Rights Advocate John McCarthy

The death has occurred of John McCarthy, the founder of the mental health lobby group Mad Pride.  John was a very powerful advocate who campaigned for the human rights of persons who experience mental illness.  He campaigned for the abolition of mental health laws that permit the “mad community can be locked up without trial forced treated and forced medicated.”  See here.  Through Mad Pride John sought to promote understanding of the issues surrounding mental health by engaging the community to participation in a fun environment.  He will be sadly missed by his family, friends and the by all those he has touched.     

 

  John’s account of living with motor neuron disease.

Employment for People with Disabilities in the United States Remains Dismal

by Eirca Edwards

This is a cross-post from the Disability and Human Rights blog.

Although employment is a right guaranteed by the UN CRPD and is a building block for inclusion, income, access to resources, health and freedom, it remains an out-of-reach goal for the majority of people with significant disabilities around the world. And, it has not improved since the passage of the Americans with Disabilities Act (ADA) in the US twenty years ago. The US National Council on Disability revealed that the difference in labor market activity rate between those employed with no disabilities versus those with disabilities is large at 57.4% in 2009 and has grown significantly since the passage of the ADA. This report can be found here. Similarly, a 2010 Kessler Foundation/National Organization on Disability study surveyed over 2,000 people with disabilities and no disability across the US. Findings revealed that employment still remains the largest gap between the two groups. A copy of this report can be found here.

Many different goals and strategies across the nation have been introduced to help promote employment among people with disabilities to mitigate this gap, including:

• Integrated employment- paid work alongside others with no disability in a community, non-segregated setting.
• Competitive employment – self-employment or work in an integrated setting that is performed on a full or part-time basis that is at least equal to the higher of the federal or state minimum wage.
• Supported Employment - individualized supervision on the job according to the individual’s abilities. A preferred option is on-the-job assistance and role modeling by peers, supervisors and colleagues, thus there is no differential treatment based on disability. Traditional formal support can be offered as well by state and federally funded job coaches who provide assistance and training to workers with disabilities on the job.
• Customized Employment –  the employer focuses on the discrete contributions of the individual in relation to the employer’s specific needs and crafts a position accordingly. This option leads to competitive employment, but provides an advantage to job seekers who struggle in the competitive job seeking process.   

Although community rehabilitation providers have demonstrated that the last two strategies of supported and customized employment lead to successful hiring and retention among individuals with disabilities, national averages reveal that funding has declined in these areas. Further, many policy and funding disincentives still exist that discourage people with disabilities from seeking integrated employment.

One example of this disincentive is the continued existence of facility-based employment, or sheltered workshops. Sheltered employment is assembly-line type of work offered to people with disabilities in a segregated setting. Participants in these settings are usually paid less than minimum wage. Critics have argued that they are expensive to operate, participants are exploited and remain in poverty, and it directly contradicts the ADA. (For a copy of this report, click here).

Yet, the federal government continues to spend four times more money on segregated adult day programs and sheltered workshops than on supported employment options that can lead to inclusive employment. In fact, only 2% of the costs of the entire US disability system are spent on programs that provide employment services. As a result, most people are unaware that 3 out of 4 people with significant disabilities spend their days in sheltered workshops.

And to make matters worse, the National Survey of Day and Employment Programs in 2009 report that nationally supported employment has been on the decline since the mid 1990’s, and the percentage of those receiving integrated employment as a whole greatly fluctuates between states -  ranging from 4% in Arkansas to 88% in Washington. For a copy of this article, click here.

There is hope, however. Employment First initiatives have spread across many states to advance the goal of integrated, competitive employment. According to the former Assistant Secretary of the Office on Disability Employment Policy, Neil Romano:

“Several states have moved forward to implement policies that focus on integrated, community-based employment earning at or above the minimum wage as the first option for individuals with intellectual and other developmental disabilities. Using these ‘employment first’ policies, states are tapping the skills and contributions of these individuals to match employer demand for a reliable, productive workforce through customized employment opportunities. In these employment first states, sheltered employment with sub-minimum wages and non-work ‘day activities’ are no longer acceptable employment outcomes. (US Department of Labor, Office of Disability Employment Policy Memo, January 15, 2009)

Over 25 states have some type of Employment First initiative, and at least 14 of them have it codified in legislation or policy. In 2007, Vermont was the first state to discontinue state funding for sheltered workshops, and Washington State aligned their Employment First policy by adopting “Pathways to Employment.” This policy allows for individual choice in employment options and gives everyone the opportunity to pursue competitive employment, regardless of disability.  With these values codified into state policies, Washington has reported a 72% employment rate for individuals with intellectual and developmental disabilities ID/DD). Other top tier states that tout a competitive employment rate of more than 40% of those with ID/DD were: Oklahoma, Vermont, New Hampshire, Connecticut and New Mexico.

This national call for integrated, competitive employment is also being echoed in the business community. The U.S. Business Leadership Network (BLN) is a national disability organization representing over 5,000 employers, including small businesses and corporations. Its goal is to assist in career preparation and employment of people with disabilities, improve customer experiences for people with disabilities, and promote the certification and growth of disability-owned business. There are 60 affiliates of BLN spread across the US, and membership is growing. With the continued push of Employment First initiatives across the country and the leadership of businesses in hiring efforts, employment rates may improve; but unless spending priorities match legal mandates, the improvement will be slight, if at all. Thus, as the old adage goes…it is time that government leaders put their money where their mouth is.

Texting Ban in the Congo: The Deaf Community

by Mary Keogh

BBC news reported a story last month on the banning of texting/sms messaging in the Democratic Republic of Congo see here. The decision to ban texting was made by the government on the basis of preserving public order following unrest after the recent elections. The deaf community has raised their concerns about the ban, claiming that it is putting the lives of members of the deaf community at risk and increasing isolation of the deaf community. There are over 1.4 million people living in the DRC who have some form of hearing impairment. Text messaging is widely used by the deaf community for communication. It has been described as an easy way for deaf people to communicate with the rest of the world, see here. The simple act of texting enables deaf people to interact independently with fellow members of the deaf and hearing community with ease.

Not alone, has text messaging opened up easy communication methods for deaf people, it is also being used as a way to communicate in case of an emergency. Text messages are now considering an essential tool for communities to maintain security, as they could spread alerts cheaply, quickly and discreetly to a large number of people who may be in danger. For example in the UK some police services are offering text services for people who are deaf or have difficulty with speaking, see here.

From a development perspective, the use of mobile phone technology and sms messaging is a vital way to communicate with marginalized groups that do not have access to mainstream methods of communication or information services.

For example, radio announcements to stay indoor during times of conflict are usually not accessible to people who are deaf. Mananga Biala, the head of Kinshasa’s main educational centre for deaf people commented that a as a result of this texting ban, members of the deaf community had no alternative means of staying in touch as many did not have access to email or the internet. Additionally he commented that members of the deaf community lives were at risk due to not being able to hear gunfire or protesting. There are many good example of how to make emergency responses inclusive for persons with disabilities in times of conflict and also during natural disasters etc. CBM have produced some useful publications on this matter see links here.

Also it is worth remembering that the Convention on the Rights of Persons with Disabilities (CRPD) provides for the right to safety for persons with disabilities, particularly in times of conflict and emergencies. The Democratic Republic of Congo became a signatory to the CRPD in 2007. By signing the Convention, the DRC is considered to be making a commitment to upholding the rights of persons with disabilities. It is also committed not to take any retro regressive steps, which might undermine the sentiments of the CRPD.  Article 11 of the CRPD asks States to ensure that all “necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters”.

Article 11 can be broadly interpreted as asking States to take a range of measures to ensure the safety of persons with disabilities during times of conflict and natural disasters. These measures can be very broad, but at the very least, should ensure that methods of communication used during times of conflict are accessible to and inclusive of persons with disabilities, and in this particular instance, people from the deaf community in the Congo.