Delighted to learn that the preparatory work done on behalf of UNDP Botswana has now yielded the adoption of a Persons with Disabilities Law on the occasion of Persons with Disabilities Day. As a consultant it is a delicate task to try and understand the inner workings of a country and its administration, adding international obligations and the growing practice to support changes that will have a meaningful impact on the lived experience of persons with disabilities, it appears that in the case of Botswana a good mix of national self-representation, national legal expertise and international support brought about the necessary change towards a more inclusive and accessible society.
On October 1, 2022 I delivered the Memorial Lecture at Hartheim, the live stream is here: https://www.youtube.com/watch?v=pV4z8fIM1oU, the text of my lecture:
Welcome to you: who have come as experts in your own right, as self-advocates, to commemorate the murder of persons with disabilities.
Welcome to all of you who have lost a relative or loved one to almost immeasurable acts.
To all of you who have come here today to commemorate the victims of Nazi euthanasia and to reinforce the “never again” that must necessarily result from it: welcome.
In all the uncertainties, shocks that surround us at the moment, it is difficult to find a beginning. One is no longer sure whether the speed of events is “only” the distortions of growing inequalities and the climate catastrophe or also, to a certain extent, the momentum attributed to illiberal currents.
It is a lot, often too much, and it seems increasingly difficult to find moments of reflection. In particular, common groundand the unity seem to have currently receive little space.
A few weeks ago, aspiring musicians from Ukraine demonstrated their skills at a concert in Salzburg. While they were playing enchantingly, a few thoughts inevitably ran through my head: “Do the musicians know how their closest relatives and friends are doing? When did they last see their family? Will they ever play in front of them again? When will there be concerts of this kind in Ukraine again …?”
And then my eyes fell on the make of the grand piano: exactly the same that my grandmother once played in Garmisch. And with it – along with so many other things that resonated – also the question of how the light-heartedness of her childhood in the Bavarian mountains could evaporate as it did.
In the omnipresence that memories can develop, it is one thing to know rationally how National Socialism arose and led people to authorise innumerable atrocities, to set them in motion or to make them possible by omission; at the same time, the consequences of National Socialism remain elusive on a personal level.
My grandmother, Annemarie Klein, sold her piano after she fled, having married Ernst Böhm at a very young age. She got on very well with her father-in-law, Adolf Böhm. Together with his son, he ran a cotton factory in Wilhelminenstraße in Vienna. It was a modern company that attached great importance to good working conditions. Adolf Böhm took an interest in – political – Zionism ‘on the side’, as it were. He wrote one of the standard works on Zionism that is still in use today: “The Zionist Movement.” In addition, there are numerous articles and speeches by him.
His involvement as a member of the Jewish Community and his book on Zionism attracted the interest of Adolf Eichmann. Eichmann wanted a list of the “most prominent Jews” from Adolf Böhm and therefore made daily appearances at the factory from 14 March 1938. After several weeks, according to anecdotal evidence, the pressure was once again massively increased and the library sealed. This was too much for a book lover like Adolf Böhm; my great-grandfather had a nervous breakdown and was taken to several psychiatric intermediate stations as part of the T4 actionand murdered here in Hartheim in April 1941.
In the meticulous, systematic murder of prominent people in particular, all traces were covered up and files destroyed. In addition, there was also deliberate misinformation, such as that according to which my great-grandfather died of “pneumonia” in Chelm, Poland. “Fake news“ of the time, which also made it into the Encyclopedia Judaica.
One runs out of words in an effort to capture and express these atrocities and especially the mixture of ruthlessness and meticulousness.
This makes all the more important the answers that the then still young community of states found in the Universal Declaration of Human Rights after the end of National Socialism:
“All human beings are born equal in rights and dignity …”
The reality of life for persons with disabilities globally – and also in Austria – fails daily to meet this claim to guarantee equal opportunities and the implementation of all human rights. Ensuring that persons with disabilities are respected, that their self-determination is strengthened and recognised, and that they can lead an equal life, is far too often still a shadowy sketch of the future instead of factual reality.
The Convention on the Rights of Persons with Disabilities, which was finally negotiated in 2006, guarantees all persons with disabilities all rights and the associated dignity in everyday life. To recognise that persons with disabilities are self-determining and have a right to live their self-determination.
Incidentally, the assistance that persons with disabilities sometimes need in shaping their self-determination is not so fundamentally different from assistance that the so-called ‘chronically normal’[1] people use on a daily basis. It is the level of detail of information and methods, but not the act of self-empowerment that goes on between an opinion-forming process in a random board office, the cabinet of a provincial governor or just in supported decision-making. But it is still perfectly acceptable to comprehensively devalue the decision-making of persons with disabilities without putting a stop to the abelism or paternalism encoded therein.
This is also why we are taking massive steps backwards in education: segregation of persons with disabilities is commonplace, the well-meaning references to the importance of inclusion are nothing more than phrases. This is first and foremost a human rights violation vis-à-vis persons with disabilities who have a right to equal participation in a school of their preference and choice. But it is also a symptom of a school system that increasingly fails to do justice to anyone, learners and teachers alike.
The catastrophe that is looming here has been vividly described by the Court of Audit, among others: the regulations in this area are so outdated and impracticable that school trials and pilot projects have been permanently established at more than half of Austria’s federal schools in order to avoid arcane rules. The steadily growing number of functionally illiterate – completely devoid of any ethnic attributions – people across all social strata should have prompted everyone to act for decades.
No less alarming and scandalous is the fact that in 2022 persons with disabilities are again be increasingly dependent on donations. A life of self-determination is still possible for very few persons with disabilities, the mechanisms of exclusion are too strong, the need to “alleviate suffering” with handouts instead of actually making equality possible with rights and de facto empowerment, as the obligations for the federal and state governments in the Convention stipulate, is too deep-seated. The pandemic and inflation are dramatically affecting people in precarious working conditions, but also those who are living on social benefits that are too low to start with.
A third and final example: structural accessibility, where the “neglect of civility” for equal participation, to a truly representative democracy measured against legal and human rights commitments, is currently progressing rapidly. Far too often, structural accessibility is not implemented, or far too often people believe that they know what is required and then wonder about the stairs that have not been considered or the door frames that are far too narrow. The fact is, rooms in which everyone has enough space have been guaranteed in various regulations. And: as soon as rooms are structurally accessible, everyone feels much more comfortable and welcome.
What do the examples of education, the failure to guarantee social security and structural accessibility have in common? The exclusion of persons with disabilities continues to happen primarily at the structural level.
Structural means: it is difficult to attribute exclusion and human rights violations to individual persons. It is the way decisions are made, the processes by which permits are granted, the specifications that serve as the basis for planning that prevent all people from experiencing safety, equality and well-being.
In this structure of non-responsibilities, those who were already partially excluded are more vehemently marginalised. Because prejudice, stigma and other aspects of exclusion are constantly reinforced in this mix. And we all know, which socio-political tendencies and political ideas gain particular momentum as a result.
This is precisely why a commemoration in Hartheim is necessary and also particularly painful: the exclusion of personswith disabilities is an indicator of the basic constitution of a democracy’s claim to equality.
More stigma and prejudice tends to flow into the exclusion of persons with disabilities than into the exclusion of other groups of people, also because the demarcation between “normal” and “not normal” is drawn particularly harsh. And all the more urgent and insistent a “never again!” here in Hartheim, today and every day.
Implementing the anti-fascist basic consensus means in particular respecting and implementing all human rights for all. “All human beings are born equal in rights and dignity” also means a self-critical approach to structural violence, be it in education, in the prevention of inhuman and degrading treatment or in dealing with those who are actively threatened for their opinions, as has happened in a number of cases in recent years and most recently ended fatally for Dr. Lisa-Maria Kellermayr.
We must do more to make human rights a reality, especially where responsibilities seem to get lost and no one seems to be legally accountable. For it is precisely in this supposed space between legal and moral responsibility that the momentum is created for a growing number of human rights violations – also by omission – and thus the impetus for anti-democratic currents.
This makes the commemoration here at Hartheim Castle all the more important. And the daily efforts of the team of the learning and memorial site to convey facts, to point out developments, to classify mechanisms that discriminate and exclude and other aspects that made the emergence and National Socialism itself possible.
The focus of the educational work is on young people, who are made aware of the almost incomprehensible, who are sensitised to mechanisms of exclusion as well as to the consequences of unquestioned norms: legal as well as biological. Another focus of the activities of the learning and memorial site is the inclusion of persons with disabilities. Dealing with the inhumane treatment of impairment requires a high degree of sensitivity and empathy. Other mediation methods are also needed to actually ensure an accessible space. An example of this is the new permanent exhibition, which was designed with a lot of thought and heart and is now rightly acclaimed and brings many visitors to this difficult place.
Ongoing research around the National Socialist euthanasia programme, here and at other sites, complements the work of the learning and memorial site. I would like to thank the board and the team for their enormous commitment, their constant efforts to convey the unimaginable in a factual, inclusive and accessible way and the daily renewal of “never again!” as well as the affirmation of human rights here at Hartheim Castle.
In keeping with a growing tradition of commemoration, I now invite you to a minute of silence and remembrance, and may I conclude by asking you: use your human right to freedom of expression, speak about the importance of ensuringall human rights for all.
A new book “Accessible Technology & the Developing World” discusses the failures of inaccessible technology in resource constraint settings (developing world) and provides examples of increasing accessibility. In the opening chapter ‘Development for All: How Human Rights Break Down Barriers to Technology’ I provide an overview:
Development efforts—the provision of support to countries with lesser economic resources—have long overlooked persons with disabilities. The Convention on the Rights of Persons with Disabilities (CRPD) tries to rectify this with a stand-alone provision on inclusive development, ensuring that efforts to accelerate economic growth and related factors are inclusive of and accessible to persons with disabilities. This chapter discusses the rationale behind the stand-alone provision and the potential it holds for more equitable and inclusive growth, including the role that technology plays in increasing accessibility.
The World Health Organization’s Mental Health Action Plan 2013–2020 stipulates human rights as a cross-cutting principle (WHO, 2013) and foresees global targets to update policies as well as mental health laws in line with international and regional human rights instruments. The international human rights agreements repeatedly refer to health, including mental health. The most pertinent provisions related to mental health are enshrined in the 2006 Convention on the Rights of Persons with Disabilities (CRPD), which sets out human rights in an accessible and inclusive fashion to ensure the equal participation of persons with disabilities. The inconclusive description of disability in the treaty overtly refers to ‘mental impairment’ as part of an explicitly evolving understanding of disability. This text sketches some of the underlying concepts as they apply to the realm of mental health: non-discrimination of persons with disabilities and measures that should be taken to ensure accessibility in a holistic understanding; removal of social and attitudinal barriers as much as communication and intellectual barriers but also institutional hurdles. The CRPD’s paradigm shift away from framing disability mainly through deficits towards a social understanding of disability as the result of interaction and focusing on capacity is the core on which the provision of mental health services at community level to enable participation in society shall be ensured. Questions of capacity, also to make decisions and the possible need for support in so doing, are sketched out.
On July 15 I will discuss supported decision-making at IASSIDD, here is the abstract:
With the Convention on the Rights of Persons with Disabilities (CRPD) in force in a majority of the world’s countries, the necessity to frame human rights inclusively and accessibly is firmly established. The move from wanting to “fix” people by focusing on perceived deficits and medical aspects of impairment to needing to “fix” societies by reducing attitudinal barriers is underway, still haltingly in many places.
Enabling and empowering persons with disabilities is comparatively easily done on an individual basis. The negotiation of the Convention itself is a case in point on how processes can shift quite dramatically, when the meaningful participation of persons with disabilities is made possible. Importantly, a lot can be learned generally from this and related processes in how marginalized groups can and should contribute to mainstream policy and law development.
The profound challenges of the Convention’s implementation arise at the law and policy level and in its application to larger institutions. How does one shift from well-tested routines and carefully planned and well-intentioned procedures to an approach that empowers people to live independently? How does one move from cotton-wooling people to embracing their need – and right – to make mistakes, go overboard and transgress?
A core expression of the right of all persons with disabilities to equally enjoy all human rights is the right to act their legal capacity. The application of this provision (Article 12 CRPD) raises some profound challenges in enabling the decision-making of persons with disabilities.
But does it really?
Granted: there is a need for more assistance, increased support and added resources. But is there really such a difference in what we describe as supported decision-making for persons with disabilities to what people in the so-called mainstream practice every day? How, exactly, is the process of a prime minister being advised by an army of advisers different from supporting the decision-making of someone who has an intellectual impairment?
Not wanting to diminish the responsibilities of prime ministers and the complexity of some of the issues placed before them: it appears that we are all too easily pushing the decision-making of persons with disabilities into a special realm with separate rules and different standards, which are also linked to status and its attached economic might.
The idea of inclusion is not just that we enable persons with disabilities to be equal, to enjoy the same rights and freedoms – as they should have already for a long time. The challenge lies in questioning the ways in which the mainstream operates routinely and how persons with disabilities – due to being labeled “different” and “special” and “needy” – are missing out.
None of the representatives in mainstream society and leadership positions would ever think that they have support in decision-making. But very few people actually make bigger purchases or investments without consulting “someone.” The social and cultural codes that are applied here, are frequently denied to persons with disabilities, particularly in those settings where they are separated and treated “differently.”
Persons who have guardians point to the impact of their guardianship on their social and societal standing. They report feeling stigmatized and sensing the effect of their guardianship in areas of life beyond their guardianship’s scope. While well intentioned and often reasonably applied, guardianship creates and reinforces stigma. The CRPD provides an opportunity to revisit engrained routines and calls into question the most well meaning of policies.
Revising such policies, including some important legal questions that require thorough examination, a core obligation of the CRPD has to be upheld and implemented: ensuring the meaningful participation of persons with disabilities at every stage (Article 4 (3) CRPD). As the first experiences prove, meaningful participation fundamentally changes the conversation; it also improves the quality of the outcome in immeasurable ways.
Inclusion also means that we keep in mind that the Conventions is not a special set of provisions for persons with disabilities: it is firmly grounded in the human rights obligations that precede it. Importantly, the right to act legal capacity is also enshrined in the Convention on the Elimination of All Forms of Discrimination Against Women: Article 15 thereof. If one ponders the significant changes that women’s liberation has brought across the globe – and not withstanding the manifold gaps that still mar the road to gender equality – one gleans the profoundness of the paradigm shift that is encapsulated in the right to act legal capacity.
In going forward it is in everyone’s interest to ensure the meaningful participation of persons with disabilities. The obligation of the CRPD should be used to advance the quality of the debate rather than be viewed as a cumbersome obstacle. It is equally important to remember the ways in which society can push itself, e.g. changes and ongoing challenges in gender equality. The support for decision-making of those in power, e.g. prime ministers, should be our guiding light in ensuring the empowerment of persons with disabilities to make their own decisions – including: mistakes!
In a NYTimes Editorial the “Spread the Word to End the Word” campaign is featured with a particularly poignant text. Lawrence Downes quotes a self-advocate of Bestbuddies, John Franklin Stephens to explain why the “r-word” is unacceptable. By the way this week is “End the R Word” campaign week:
I know people who care about language who do not see themselves as heartless and who do not see “retardation” as anything to get worked up about. To them, banishing the R-word for another clinical-sounding term is like linguistic Febreze: masking unpleasantries with cloying euphemisms.In this, as in other cases of discrimination, it’s probably best to let those affected speak for themselves.
Here is John Franklin Stephens, a man from Virginia with Down syndrome who serves as a “global messenger” for the Special Olympics. He has written op-ed articles giving lucid voice to thoughts you may never have heard before:
“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”
“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”
The Member States of the Convention on Cluster Munitions are meeting for the third time, returning to Oslo, Norway, where the treaty was first opened for signature. Member States are rightly hailing the speed with which cluster munitions have been stigmatized.
The School of Nursing and Human Sciences at Dublin City University hosted an interactive conference where speakers, performers and conference participants will explore the prevailing impact of dysfunctional oppressive communication patterns on marginalised communities.
A report on the Mental Health Trialogue Network Ireland (MHTNI) a community development initiative in Irish mental health was launched. The Network aims to empower communities in Ireland to become proactive in communicating about mental health through an open dialogue and participatory process called ‘Trialogue’.
The NYTimes online has a series on the “Realm of Senses“: it features the New York impressions and perceptions of people who have lost a sense. Pictures by Béatrice de Géa accompany the description of people like Katherine Vasquez who does not have sense in her legs and feels like “walking on clouds” when exploring the city in her wheelchair and Martin Greenberg, who is deaf-blin and “captures the city through its vibrations.”
The United Nations have set eight goals to be reached by 2015: halving poverty, ensuring universal primary education for all among others. Persons with disabilities are largely being left out of the policies and programs put in place to reach the so called Millennium Development Goals (MDGs).
The General Assembly of the United Nations has adopted a resolution calling for the realization of the MDGs also for persons with disabilities. The world’s parliament among others calls for ‘explicit’ mention of persons with disabilities in the upcoming review of the goals. The Journal for Disability & Development has published an analysis of the resolution. More information on the issue can also be found at www.IncludeEverybody.org
The Boston Globe reports – ht: UN Wire – about the work of MIT doctoral candidate Amos Winter on a “leveraged freedom chair“, designed to be produced with low cost material for the otherwise hardly accessible to inaccessible surfaces in developing countries. Reminds me a little of “design for the other 90%“.
In dissecting the complexity of migration, the Commissioner rightly warns of the implications of language in public debates:
The choice of language is very important to the image which the authorities project to their population and the world. Being an immigrant becomes associated, through the use of language, with illegal acts under the criminal law. All immigrants become tainted by suspicion. Illegal immigration as a concept has the effect of rendering suspicious in the eyes of the population (including public officials) the movement of persons across international borders.
The bid of Signmark, the deaf Finnish sign rapper to represent his native Finland in the upcoming Eurovision Song-Contest was slimly defeated by another group. Here is the video:
The NYTimes reports the sad state of persons with disabilities, particularly those with psycho-social (mental) disabilities in former Easter Europe. Regulations dating from Communist times are still enacting, leaving little to no appreciation for the (human) rights of persons with disabilities.
Meanwhile, the Disability Organizations in Britain are pushing hard for an early ratification of the Convention on the Rights of Persons with Disabilities, which the government is holding off, citing concerns over not being fully compliant.
This past weekend Finnish Sign-Rapper SIGNMARK performed at the Culture Festival of the Hungarian Deaf Association, SINOSZ. Marko Vuoriheimo raps in sign language while Heikki and Brandon do the Finnish and English vocals and Kim provides the beats.
Note that wikipedia lists SIGNMARK on a par with the likes of Ludwig van Beethoven – as deaf musician.
Today it was announced that SIGNMARK will take part in Finland’s Finals ahead of the 2009 Eurovision Songcontest!
The Para-Olympics are well underway, time to highlight the biography of the Executive President of Beijing Organizing Committee for the Games of the XXIX Olympiad (BOCOG),Deng Pufang. His family, most obviously his father, Deng Xiaoping, were targets of Mao’s cultural revolution. The Red Guards imprisoned Deng Pufang, tortured him and threw him out of the window of a multi-story building. Deng was rushed to a hospital but was denied helped because of being the son of a capitalist. Deng is a paraplegic since, he is a high-profile advocate for the rights of persons with disabilities in China and beyond, he is the President of the Federation of Persons with Disabilities in China and Chairman of the China Welfare Fund for the Handicapped.
A colleague was kind enough to alert me to an in-depth look at Chinese perceptions of impairments/disability. The Irish Times reports: “China’s 83 million disabled people are a largely invisible presence in a country where disabilities are viewed as a source of shame in some families, particularly in urban areas, and where discrimination is widespread. But the Paralympics are being hailed as an opportunity for China to deal with deeply held prejudices, and to act as a catalyst for improving the situation for disabled people.”
One positive step toward a more inclusiveness has already been taken: tourist sites such as the Forbidden City and public transportation have been made accessible with ramps and elevators. Granted, it is only the center of the capital city but it is a leap (sic!) in the direction of inclusion.
