PART 2 of 4: Blog from the UN Human Rights Council – Social Forum
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD)
By Mary Radnofsky Ph.D.
October 3-5, 2016 (Geneva, Switzerland)
Remember when you’d go to the cafeteria, push your tray along a track, and wish you could take one of – well, everything? You’d be reasonable, though, and choose carefully your appetizer, main course and side dishes. Dessert, however, required getting one of each! As a result, your tray would get a bit crowded. Luckily, you thought to grab a second tray, so all you had to do was slip it out from under the top one, and fill it up.
Here, then, is your second “tray” from DAI’s representation at the UN Social Forum, with Peter Mittler and me – Mary Radnofsky. Hope you liked the “appetizers” in my last posting, because now you’re in for the a few main courses and side dishes. Think of it as a smorgasbord! So grab a cup of tea, have a seat, and enjoy a taste of how the world is trying to apply the Convention on the Rights of Persons with Disabilities.
Monday, October 3, 2016 On Accessibility
The UN Convention on the Rights of Persons with Disabilities (CRPD) promotes equal access for all. Towards that end, the head of Brazil’s National Civil Aviation, Marcelo de Souza Carneiro Lima, described the changes and adaptations that he made both structurally and in terms of services provided at the airport authority to prepare for the 2016 Para-Olympics in Rio de Janeiro. They had over 1000 people in wheelchairs; some with guide dogs, walkers, crutches, companions, people with intellectual and multiple disabilities.
In the introduction of Brazil’s “Guide to Passenger Rights and Accessibility,” all travellers, including those with disabilities, are guaranteed the chance to “lead their lives independently, safely, and autonomously in public spaces and when using public facilities and equipment.” It’s a formidable promise, backed up with considerable resources, brochures, complaint procedures, a human rights ombudsman, a 24/7 human rights hotline, and a lot of good will to do what’s best for all people. An impressive accomplishment.
Tuesday, October 4, 2016 The Psychosocial Side
Michael Njenga – Kenya said that people with psychosocial disabilities are not allowed in their communities to choose their own clothes, attend weddings, or make formal and informal decisions. It is difficult to even convince doctors to deal with patients without them forcing a certain kind of treatment on them.
Rosa Damayanti – Indonesia said that families can do whatever they want and it’s not illegal: e.g. put a person with dementia in chains, on blocks, in institutions with constant physical restraints. But the government can’t close the institutions, because the people would be out in the street. Family would reject them anyway. Something needs to be put in place if they close the institutions. It’s impossible to have a formal guardianship system, but they would like to have supported decision-making in Jakarta.
Solano Carboni, from Costa Rica, explained that guardianship was removed and so one person no longer has the power to do substitute decision-making for a person with dementia. The person with the disability can appoint a guardian, and a lawyer is not necessary. So it’s free. This kind of guardianship can be reviewed periodically, or the family can ask for legal access and personal assistance.
Peter spoke emphatically about the stigma and marginalization of people with dementia.
In South Africa, support groups are perceived as controlled externally, and so looked upon with disdain. User groups and support groups do exist, but the bridge needs to be made with people who need them.
Salam Gomes – co-chair of the World Network of Users and Survivors of Psychiatry, Colombia has seen a lot of suffering, but believes we should highlight peoples’ abilities more than we do their disabilities. Families are affected in many ways. Supporting the person means being there at all times, which empowers the person. Families need to be solid support, not sources of dependency. He said we should generate a system that creates freedom for decision-making and creates freedom. We must minimise risk, of course, but improve the quality of life. Inclusion should be seen in education work life, community.
Tuesday, October 4, 2016 Strengthening Equality and Specific Measures
Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Dep’t of Social Development in South Africa said they have statistical measures, and track government performance, but realize it likely doesn’t change anything at the level of the user of services. So she said they need a dynamic, evolving system, not one that has a 5-year plan, because as the world moves ahead, they stay 5 years behind, and essentially regress.
Ms. Ana Lucía Arellano, Chair, Latin American Network of Non-Govt Organizations of Persons with Disabilities and their Families, commented that the situation is critical. There are scarce resources, but they need to educate the family, and reach people with disabilities as they don’t yet realize they can raise themselves up. Many have low self-esteem; and she said we must design global strategies so people realize they’re entitled to reasonable accommodation and support at a national level. It sounds as though the governments of the country don’t make an effort to get the word out. They don’t give the schools proper support. She said they need to stop backtracking, and align the 2030 agenda with the convention. She reiterated that she wants change, and to get something tangible.
Ms. Esther Kyozira, National Union of Disabled Persons of Uganda – explained that “Reasonable Accommodation” is not law there; victims that theoretically could complain (based on the human rights convention) don’t know that they can. People who are in need, are not aware or empowered at all.
The Interactive Dialogue includes the voice of people from the audience.
Richard Rieser, World of Inclusion, UK – said that we need reporting procedures; some schools may accommodate, while others do not, but to whom does one complain when it doesn’t work right?
Salam Gomes (WNUSP, Colombia) talked about the exclusion of people with psychosocial disabilities, who are in close relation to those with intellectual cognitive impairment, but let’s not stick on the label of “mental” disability, which can cause confusion. He asked that we think about the institutionalized and those in prison. In Colombia, they’ve made progress in disability law, recognizing psycho-social conditions such as depression, which is one of the primary reasons people leave their jobs.
In Argentina, however, “reasonable accommodation” is left to the discretion of the employer, leaving employees quite without recourse, leading to another classic social Darwinian environment, where only the strongest survive.
Many of you have met Mary Radnofsky, either online in one of our weekly support groups, on Facebook, or at a conference. You may have seen her presentation from Budapest on our blog as well, and if you haven’t watched that, we do highly recommend it.
We are thrilled she recently accepted a position as a co-opted member of our Board, and has also agreed to be more active DAI member by writing blogs, and being DAI’s Editor. Thank you Mary, from all of your new DAI colleagues, family and friends.
One. It Can Be Everything.
by Mary L. Radnofsky, Ph.D.
Second only to my confirmed diagnosis of dementia, I’d say my current transitional period is the most difficult stage of my life: I’m still part of a past with people who knew the Old Me, and I have a foot in the emerging present, as the New Me, but it is difficult to fit well in either world.
Lately, I’ve been managing bits and pieces of too many tasks without actually enjoying any of them. So last week, I stopped everything, closed my eyes, and envisioned doing just one thing all day. I’d let go of everything else (including my phone). I don’t know how often we allow ourselves to do just one big thing at a time anymore, but the idea appealed to me.
Then an opportunity arose: I was offered a paid, improvisational acting gig for three days at the local university law school, to role-play a witness in a court case. I’d created scenarios in the past to train teachers, so I was sure I could do this. I studied my complex character, and figured out arguments for her case.
My first day at the law school, I attended lectures and studied my part. I created twists and turns in my testimony for the students to solve. This was like teaching; I felt like the Old Me – (well, maybe not the pre-dementia superwoman who had a career, relationship, home, friends, travel, and fun), but at least the Me who was happy immersed in a single, worthy project.
Over the next two days, I had a new commute, but simplified it with Uber, to keep out the distractions of bus, metro, traffic, noise, heat, crowds – the minutiae of life – that can gnaw at what you love. Acting demanded all my focus. I studied, I learned.
The experience reminded me of my student days, when I’d put off projects until the last minute, so I had to focus on just the one until I finished. It was great. And I believed I’d pulled it off again, that I still had “it,” a gift for words, a quick wit (or at least the ability to fool people).
On the day, though, one rather lawyer in charge publicly criticized me. I defended my portrayal of a tough, working class woman to show the students a different kind of client. I gave examples of how they could have convinced me to give the information they needed. But at break, the lawyer hijacked my students, kept them from working with me, and ignored my very presence. At lunch, I confronted the lawyer, who condescendingly dismissed all I said.
Though my interpretation of the role (and situation) was far from perfect, and whether I was wrong or the lawyer was a jerk, I realized I didn’t fit in. I didn’t like the way that felt. And I’d been publicly disgraced. I didn’t like that either. Maybe it was because of my perceived lower social status (I was an actor, he a lawyer), that he saw fit to treat me like dirt. But I was still me the professor inside, and I didn’t like being treated that way. My only comfort was the thought he probably treats waiters and cleaning ladies with the same disdain.
But it still hurt. I’d thought I still had “it.” I wanted it to be true. This had all the trappings of middle-class life, job security, civility – the kind of social and financial security I’d known for decades (now gone from my life as I have no job or health insurance, retirement, savings, or family, though thankfully still a few friends). But I probably wasn’t picking up on nuances and context clues.
I can’t pass anymore as the Old Me. That’s clear. So today I stop trying. Today, I start to enjoy the New Me. I can still learn, teach, risk, love, fail and try. And as I evolve with my dementia, I’ll surely do things differently. I’ll just have to figure out my new role in society. I still have the right to enjoy Life, and I still want make a difference.
I’m still part of society, even with my new feelings and interpretations of reality. I believe that means it must also evolve with me and others like me. An evolving society must accept people with changing abilities and limitations. An evolving society must be willing to organizationally re-invent all that is necessary to ensure that society serves the needs of people, not the other way around.
I believe we can help society understand its changing responsibilities, and let go of its outdated beliefs. Society is made up of us all – including those of us with dementia. It’s time to redefine our roles within society, and to determine the kind of society in which we all want to live. e pluribus unum*
*“e pluribus unum” – Latin, appearing on US coins, meaning, “Out of many, one.” Believed to come from Heraclitus, “The one is made up of all things, and all things issue from the one.”
DAI member Mary Radnofsky reports from her time at the United Nations in New York. Mary has also provided a gallery of images she took whilst attending the meeting representing us. Thank you from all of us Mary.
I was recently in New York to represent DAI at the annual United Nations Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) June 13-17, 2016.
DAI’s Human Rights Adviser, Professor Peter Mittler, had to be in Brussels for another important event and has contributed background information for this report.
DAI is the global organisation OF people with dementia. We work in close but autonomous partnership with Alzheimer’s Disease International: the global organisation FOR people with dementia. In April 2016, the Council of ADI adopted a human rights-based policy, which includes full access for people living with dementia to the CRPD.
The United Nations has two basic roles: Peacekeeping and Economic and Social Development.
The UN commitment to human rights was reflected in the original Universal Declaration of Human Rights in 1948. This was followed by legally binding Conventions on Economic, Social and Cultural Rights; Civil and Cultural Rights and by a series of Conventions designed to benefit sections of the world’s populations who were not benefiting from the 1948 Declaration: women, children, people exposed to racial discrimination and torture, migrant workers. The CRPD is the most recent of these treaties, and preliminary discussions are now taking place on a Convention on the Rights of Older Persons.
The UN Convention on the Rights of Persons with Disabilities (CRPD)
The CRPD is an international treaty whose purpose is to ensure that governments safeguard the human rights of persons with disabilities. Because it was adopted by the UN General Assembly in December 2006, we are celebrating the 10th anniversary of a landmark international agreement that holds governments both to a moral standard and to a commitment in international law to promote and protect the rights of people with disabilities.
ISSUES RAISED BY DEMENTIA ALLIANCE INTERNATIONAL
Although people living with dementia are included in the broad definition of disability in Article 1 of the CRPD, they are being excluded from its implementation by their governments (except in Scotland).
In addition, new regional and national dementia strategies launched in the last few years by governments who have ratified the CRPD have not used CRPD Principles and Articles to underpin these strategies.
This may reflect the fact that organisations for people with dementia were not present when Disabled Persons’ Organisations first proposed such a Convention to the UN in the 1980s, while it was being co-drafted by government representatives and Disabled Persons’ Organisations or in its subsequent development and monitoring.
Under the Convention, DAI already has the right to raise its concerns with the United Nations, the European Commission and the World Health Organisation because the exclusion of people with dementia from an international treaty to which they are legally entitled is tantamount to discrimination, even though this may not be the intention.
Participants at the Conference of States Parties (COSP)
Delegates from the 165 countries that have ratified the CRPD assemble yearly for the COSP to discuss what has, and has not been achieved in meeting the requirements of the treaty.
Non-Governmental Organisations and Disabled Persons Organisations can also send representatives, as can all recognised Civil Society Organisations. The unique character of the CRPD Committee, 17 of whose 18 members have a disability, makes the CRPD the first UN treaty to be created and monitored by the people it is designed to benefit. Accordingly, it takes full account of the views of organisations of persons with disabilities.
Full information on the COSP, CRPD, a list of ratifying countries as well as the UN Enable Newsletters can be found on www.un.org/disabilities in English and other languages.
The United States Congress has still not ratified the CRPD, though it participated in its drafting and President Obama’s signature commits the USA to its General Principles. These are:
Respect for the inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
Full and effective participation and inclusion in society
Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
Equality of opportunity
Equality between men and women
Respect for the evolving capacities of children with disabilities and respect for the rights of children with disabilities to preserve their identities.
The UN 2030 Sustainable Development Goals (SDGs)
The main theme of this COSP meeting was “Implementing the 2030 Development Agenda for all Persons with Disabilities: Leaving No One Behind.”
The 17 Goals are: No Poverty; Zero Hunger; Good Health and Well-Being; Quality Education; Gender Equality; Clean Water and Sanitation; Affordable and Clean Energy; Industry, Innovation and Infrastructure; Reduced Inequalities; Sustainable Cities and Communities; Climate Action; Life Below Water; Life on Land; Peace and Justice: Strong Institutions; Partnerships for the Goals.
Because people with disabilities had not been mentioned in the original 2000-2015 Millennium Development Goals, Disabled Persons’ Organisations such as our friends at Inclusion International (www.inclusion-international.org) have worked hard and successfully to ensure that persons with disabilities were explicitly included in the indicators that have since been developed to check its progress.
DAI has expressed its concern that people with dementia, especially in Low- and Middle-Income Countries, are at greatest risk of being Left Behind because they have not been involved in the drafting of policies to protect them. DAI will be raising this issue with the UN High Commission on Human Rights which monitors all human rights.
The four sub-themes for the COSP were:
Eliminating poverty and inequalities for all persons with disabilities
Protecting the rights of persons with mental and intellectual disabilities
Enhancing accessibility to information, technology and inclusive development
Celebrating the 10th Anniversary of the CRPD.
MY CONTRIBUTIONS, CONTACTS AND IMPRESSIONS
My name is Mary Radnofsky. I’m American. Although I was diagnosed many years ago, I’ve only ‘come out’ two months ago. I’m here to represent Dementia Alliance International. We ARE the voice of dementia: We speak for ourselves.
Since DAI was founded by Kate Swaffer and six others in 2014, we have gained some 2000 members from across the world with a wide range of cognitive impairments and medical diagnoses of dementia, the most common being Alzheimer’s Disease. There are some 50 million people living with dementia across the world, and our numbers are set to double every twenty years because people are living longer.
Whatever our diagnoses, we are, like all of you, unique individuals. But all too often, we are stripped of that individuality at the point of diagnosis. We then become subject to the stigma, fear and ignorance that surrounds the complex and little-understood effects of this group of diseases on our day-to-day lives, in our homes, on our families and friends – effects which can lead to social isolation and the denial of our individuality.
My question was: “How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt that we’ve had to hide our condition rather than deal with our society’s stigma?”
As I was leaving the UN on my last day, a young man who works in the office of the UN Special Rapporteur on Disability told me that my comment regarding stigma associated with the disability of dementia was important, and the first time he had heard this issue raised. He assured me it would be included in his UN report.
Legal Capacity and Our Rights
Regarding “legal capacity” of individuals diagnosed with mental or intellectual disabilities, advocates stated that ‘substitute decision-making mechanisms’ must be replaced by ‘supported decision-making’ but these practices are on a continuum, and legal experts are split on where to draw the line.
The CRPD calls for laws which systematically allow – and often encourage – someone other than the person with the disability to make decisions on his or her behalf should be abolished. DAI maintains that decisions about competence should be based on impartial, independent assessments, such as yearly driving tests.
Klaus Lachwitz, President of Inclusion International and a lawyer, said that no country has thus far successfully implemented an assistive decision-making program that meets CRPD requirements. Several have tried but have merely substituted one decision making body for another. One complication is that people with dementia and mental and intellectual disabilities may want and need assistance. How and when to provide that assistance is difficult.
Teresa di Fiandra, from the Italian Ministry of Health explained that her country created a Support Authority to help people with decision-making – not to reduce their choices but to help them maintain autonomy as long as possible.
The Civil Society Forum
I sat in on a high-level political forum on the participation of people with disabilities, and a discussion of practical steps for implementation. When the floor opened for comments, I introduced myself as a person living with dementia and representing Dementia Alliance International, with the question,
“How can people with dementia begin to participate in decision-making processes as well as in the implementation of these strategies, and become active participants or members of committees?”
Alistair de Gaetano, an expert in disability law and human rights from Dublin suggested joining advocacy groups and linking to larger networks to work on major projects together. The self-advocacy movement was a dominant theme at the conference: that is why we were there.
Several countries and organizations are highly supportive of DAI, contributing not only to our collective strength, but also to our individual mental and physical health. For example, Mohammed Ali Loutfy of Lebanon said that, despite many countries’ steps to recognize the CRPD, all governments must involve people with disabilities, because we are the experts on the conditions of our lives.
I spoke with several Italians and people from the tiny Republic of San Marino in central Italy. One of the delegates explained that when a child has a disability, there is respect for the child. The problem is that they are no longer respected when they become adults. Social attitudes must be changed.
Another Italian, Sebastiano Cardi, Vice President of the COSP, said that Italy had just adopted a new law to help people with disabilities in what he calls the “after” time, i.e., when parents or other caregivers die or leave. In other words, the state will help, but people with disabilities whose adult children care for them need back-up plans.
Speaking about the rights of women with disabilities, Judith E. Heumann, of the American Women with Disabilities Forum in Washington, DC, and advisor to Presidents Clinton and Obama, said that empowerment of disabled women is critical. In general, women with disabilities need to participate more in the electoral process, and run for political offices at all levels.
In all countries, including the US, people with disabilities are twice as likely to be un- and under-employed than non-disabled people. Yet research shows that across the board, people with disabilities boost a company’s productivity, engaging non-disabled colleagues in more creative work.
Several self-advocates with an intellectual disability from Inclusion International pointed out that many barriers to inclusion are often not due to their disabilities but rather to society’s attitudes; people with disabilities often don’t have enough choices and don’t get the needed support because other people simply don’t know or understand what those of us with disabilities find important. So it’s our responsibility to make our voices heard. Self-advocacy is key.
When Klaus Lachwitz, President of Inclusion International was asked what was missing from the dialogue on people with disabilities, he unflinchingly stated
“What’s missing is the big group of people with dementia. We’re a generation of people getting older. We all know people with dementia… So all of these things have to be discussed, interpreted and described”.
Prince Hussein of Jordan, who reported on advances in his country, commended the UN on refurbishing the General Assembly Hall but added that the high podium should be accessible. This was, after all, a Conference on the Convention on the Rights of Persons with Disabilities. The panel of officials had to sit behind a fold-up table at ground level, squeezed in front of the first row of delegates because there are a dozen stairs to get to the high podium!
Equally ironic and unfortunate were the elections for membership of the CRPD committee by Member States resulting in seventeen men and only one woman. This happened despite clear guidance from the UN that the Committee should be balanced for gender, ethnicity and location.
On a positive note, one of the men elected was Robert Martin, proposed by the New Zealand government, a self-advocate, and the first person with an intellectual disability to sit on the committee. He helped draft the CRPD and has been active in its implementation ever since.
It took ten years for a person with an intellectual disability to be elected. How long will it take for a person with dementia to join him?
IMPLICATIONS FOR DEMENTIA ALLIANCE INTERNATIONAL
At DAI, we are uniquely situated to provide the expertise needed for these discussions. There is a role for all of us to play as we advocate for our rights and simply show how we can live well with dementia for many years.
So start to think about what YOU can do to improve the lives of people with dementia – including your own. You might want to print and mail out flyers, make phone calls, write or edit letters, do fundraising, put an ad in the paper or online for group events, record stories from people living well with dementia, speak to classrooms or clubs, assemble articles about brain research, post notices of drug trials and non-pharmaceutical treatments, attend support groups, share recipes, describe successful dietary and exercise ideas – above all, recruit new members to DAI!
I need DAI so I can maintain the quality of life that I’ve found through support groups and advocacy. DAI needs you because you can make a difference in the world for everyone whose lives you touch. Through letters, social media, phone, email, and in person, you can still reach a lot of people that need DAI too.
Let’s continue to help each other enjoy our lives, starting with our human right to medical care, living in our communities, and choosing how we want to be treated.