Category Archives: disAbility rights

Phyllis Fehr at the NCD Alliance Workshop: “Our Views Our Voices”

Dementia Alliance International (DAI) board member and ODAG Human Rights Advisor Mrs Phyllis Fehr represents DAI at the NCD Alliance Our Views, Our Voices workshop. This workshop has brought together people living with NCDs from across the world. The objectives are to:

  • Share the Our Views, Our Voices consultation results with participants
  • Contribute to finalising the Advocacy Agenda of People living with NCDs
  • Explore notions of community identity among people living with NCDs
  • Articulate the vision of the Advocacy Agenda
  • Discuss how to implement the Advocacy Agenda of People Living with NCDs

The workshop will result in the finalizing of the Advocacy Agenda of People Living with NCDs which will be launched at the Global NCD Alliance Forum. It will also serve to cultivate a group of people living with NCDs that will go on to champion the Our Views, Our Voices initiative.

Representing DAI, Phyllis was invited to present as part of the second workshop on Day one, on social justice. This is her speech:

Thank you for this invitation to speak today, representing Dementia Alliance International, whose members are formally diagnosed with dementia representing 44 countries.

It is also an honour to be here to represent the estimated 50 million people living in the world living with dementia, also listed as a Non Communicable Disease. We know there are a lot more people without a diagnosis, too often one they do not want, often because of stigma and social justice related issues. 

When I was 48 when I started noticing signs of dementia, but it took until I was 53 to get a formal diagnosis. Once I received this diagnosis I was told to go home, get my affairs in order and try to enjoy the time I have left.

I did this at first but it wasn’t good enough for me either. I still had my intelligence, I still had all my nursing knowledge, I felt I could use this to help others living with dementia and I initially did do this in Ontario Canada. I sit on the Ontario Dementia Advisory Group (ODAG), and am one of four co founders, as well as their human rights advisor. We are a group of people living with dementia advocating for policy change and social justice.

I also found Dementia Alliance International and joined them, and am now an active board member.

DAI was exactly what I was looking for. They are global, and they are the voice OF people with dementia. Kate Swaffer spoke at the WHO First Ministerial Conference on Dementia in March 2015, and placed human rights and disability rights onto the global stage. Many people with dementia are now actively working individually and collectively towards claiming them!

I have attended meetings in Geneva twice this year, once to speak at the opening of the 17th session on the Charter of Rights for People with Disabilities (CRPD) representing DAI. The next time as part of the civil delegation when Canada presented on their human rights issues for people with dementia. In their report back to Canada dementia was mentioned, which I believe was the first time that this is ever happened. This has given me further drive to stand up for people’s rights from a human right’s perspective.

We know the people with dementia are stigmatized in many different ways so they hide away to avoid that stigma. If we look back to the 60s people were with dementia were told to go home and that is what they did.

Let’s jump ahead to round the year 2000 when my mother was diagnosed with dementia; she too was advised to go home get your affairs in order. My mother hid her diagnosis for many years but at this time they were still very little they could do for people with dementia. In the end my mother ended up in a nursing home because of her diagnosis she was most times left in a chair and wasn’t included in anything.

But it is still happening today!

I too was given the same advice but because of my intelligence and my nursing background I refused to take it. Kate Swaffer has termed this Prescribed Disengagement®; it happened to her, and it is still happening to people being diagnosed today.

I’m going to stand up and fight this because there’s has to be a better way. When we consider the continuing breach of human rights for people with dementia, there is no other choice. For example, in Canada one of the provinces has decided and is taking it to the supreme justice in the province, to have it made into law that people with dementia cannot make decisions on their own due to their disease. This is wrong, as it contravenes our human rights; people with dementia do not instantly lose capacity to make decisions for themselves at the time of diagnosis. It is a violation of the human rights and the CRPD. So we are fighting this in Canada and will have to wait to see what happens because if they do make it a law then we will be going to court and fighting this as a human rights violation.

In the early stages of dementia we are able to do things, but we need support for the disabilities caused by the symptoms of dementia to find different ways to support us to live with dementia, not only to die from it.

We need supports that currently are not offered. Things are finally starting to change for people with dementia around the world you may ask why this is happening. This is happening because of people like the late Dr Richard Taylor and DAI’s Chair Kate Swaffer and many other persons living with dementia standing up to the social norms and challenging them. I hope by being here today I have been able to instill a little bit of knowledge on you about what people with dementia are going through. If you have any questions I am more than willing to answer them, if we have no time then please come up to me during one of our breaks I am open to talking to anybody about this disease process.

In closing I want to give you an analogy received from Brenda Avadian of The Caregiver’s Voice. She said as one [Phyllis Fehr] who lives with a non-communicable disease –dementia –

We’re doing all we can to raise awareness worldwide and make dementia “communicable” by finding strength in working together and sharing our stories for advocacy.

This struck a chord with me. People are still not made aware of it and I fully believe that the more it is spoken about, and the more we fight for our human rights, the better off people living with dementia will be. Thank you.

DAI’s Chair & CEO Kate Swaffer will be following up this as she has been invited to attend the Global NCD Alliance Forum on 9-11th December in Sharjah UAE, “Stepping up the pace on NCDs; making 2018 count.” where the Advocacy Agenda of People living with NCDs will be launched and where the NCD Alliance will be mobilising NCD civil society community and bringing together approximately 300 people to discuss  I am looking forward to seeing you in Sharjah, UAE.

DAI attends mhGAP Forum 2017

Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.

Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:

Implementing the Global Dementia Action Plan into policy

“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.

I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”

Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.

  • In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
  • We are not provided with rehabilitation or other re-abling post diagnostic support
  • We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
  • These points are all relevant to national dementia plans

By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:

  • Significantly improve the quality of life of persons with dementia and our families and care partners
  • Increase independence
  • Reduce the economic cost of dementia to individuals, families and governments
  • Ensure dementia inclusive and accessible communities

The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.

The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.

The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.

Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of communitybased rehabilitation is to help people with disAbilities, by:

  • Establishing communitybasedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
  • This is important in the context of the GDAP and in the development of national policies.

For our communities to be supporting people with dementia, based on human rights, a  new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.

We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.

  • Timely Diagnosis
  • Focus on well being/QoL
  • Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
  • disAbility assessment and support , immediately post diagnosis
  • Grief and Loss counselling, not just information about BPSD.
  • Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
  • Support to maintain pre dx lifestyle
  • Support to continue working if YOD (and is a personal choice)
  • Support to continue usual activities, socialising, sport, recreation, community engagement, etc
  • Inclusive and accessible communities (not just dementia friendly)

It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).

DAI’s Next Steps:

  • Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
  • Supporting Alzheimer’s societies in developing HR policies & plans
  • Continuing to submit parallel reports to the UN and the WHO
  • Promote human rights approach to dementia at all conferences and events
  • Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
  • Working with disability organisations, e.g. IDA and IDDC

DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:

  • Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
  • Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
  • Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
  • Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.

Finally, I have some questions for countries and civil society to consider:

  1. To what extent are your dementia policies based on human rights?
  2. How closely do you work with other disAbility organisations in your country or region?
  3. Do you know how they have used CRPD?
  4. Will you join them to ensure that people with dementia are included?
  5. How are we going to measure 75% of countries have implemented the GDAP by 2025?

Thank you.”

Kate Swaffer
Chair, CEO & Co-founder
Dementia Aliance International

“Can You Hear Me Now?” by Carole Mullikan

We are honoured to have an article written by dementia advocate and pioneer, Carole Mullikan. Thank you Carole, for sharing your story, and for living so well since her diagnosis in 1995, by role modelling to us all by focusing on what she can still do, and that for many of us, it is possible.

Can You Hear Me Now?

“Not so long ago a man in spectacles paced everywhere testing his phone in a Verizon commercial.

“Can you hear me now? Can you hear me now? Can you hear me now?”

As a first-year teacher, that was a question I often asked myself when in front of a noisy bunch of teenagers. Over time, I learned how to quiet and focus teenagers in a classroom. Yet sometimes I still needed to ask the very back row,

“Can you hear me now?”

When I began making luncheon presentations in ballrooms at state teachers’ conferences, the question arose again. Sometimes microphones are forgotten. Sometimes they malfunction, necessitating greater lung power. Other times they must be tested and adjusted.

“Can you hear me now?”

At one national conference, the microphone was working just fine, but as I took the podium, I glanced up, seeing the massive, multi-layered crystal chandelier above. Good grief! I thought to myself, what could I possibly have to say that was worthy of such splendor? But being a seasoned speaker, I persisted.

These days, I no longer speak in classrooms or at conferences. Most often I speak to just one or a few individuals. That should seem easy, but having been diagnosed with dementia, “Can you hear me now?” is still an issue. The stigma attached to dementia causes others to listen through a perceptual filter telling them the person with dementia is often confused. What he says may be wrong. She may not have her facts straight. He might be dwelling in the past or experiencing delusions. What a person with dementia says cannot be trusted. Even when I am certain of my facts and speak with authority, I question that they can hear me through the diagnosis of dementia. Too often I fall silent.

Hear me now, please!

Being automatically deprived of my credibility hurts!

Copyright: Carole Mullikan 2017

More about Carole Mulliken: Carole is a DAI member and a member on our recently reinstated DAI Action Group, about to commence moderating a Discussion forum currenty being set up for members. She is also a founding board member of the Dementia Advocacy and Support Network International (DASNI), which was the first international online support group for people of dementia. Unlike DAI, membership was not exclusive to people with dementia.

With a diagnosis of multi infarct dementia, obviously now well over twenty years ago, Carole regards dementia advocacy as a second, unpaid career and herself a veteran of the dementia wars. She lives near Saint Louis, MO, and those of us at DAI salute her for being one of the shining lights who led the way for the rest of us.

Carole worked as an educator, a school counselor, a suicide crisis interventionist, an adjunct professor of composition, an educational consultant for a division of the U.S. Department of Education, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its website. She has published freelance feature articles for print publications and for several websites.  Lisa Genova, Ph.D., author of Still Alice, recognizes DASNI and Carole Mulliken by name as contributing to her own understanding of the lived experience of dementia.

And Then I Looked Up Dementia – Women Speak Out

We are pleased to be part of the launch of this video, highlighting the impact of dementia on women, discussing the higher incidence of women people diagnosed with it, and the higher numbers of woman who become care partners to someone livign with it. Thanks to Amy Little and GAADA for pulling this project together in time for World Alzheimer’s Month 2017.

“Dementia is a global women’s health, social care and rights issue that can no longer be ignored.

And Then I Looked Up Dementia brings together women living with dementia, the actress Carey Mulligan, iNGO women’s specialists, dementia experts, government representatives and others to speak out for women affected by dementia everywhere.

Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is recognised as a global health priority. Around the world, more women than men live with dementia and face gender-specific barriers to living well with the disease.

Globally, women provide the majority of both unpaid and formal care to people living with dementia. People living with dementia can face stigma and even abuse due to their condition, for older women, age and gender-discrimination can compound this treatment. Take action to get it right for every woman living with or affected by dementia around the world.” GADAA, 2017

To find out more visit https://www.gadaalliance.org/women

UN Special Rapporteur: The Right to Health


Earlier this year the UN Special Rapporteur on the Right to Health, Mr. Dainius Pūras, from Lithuania presented his visionary report on mental health to countries at the Human Rights Council (report available in several languages here). We congratulate them on this very important work.

The report provides an important framework and road map for mental health that responds to people’s needs, respects their rights and ensures that the dignity of every person is respected.

Dementia is listed under mental health at the WHO, but it is pleasing to note that due to the advocacy of DAI and Autism International at the Mental Health GAP forum last year, dementia is now formally recognised there as a condition causing those of us digosed with it as having cognitive disabilities, rather than it being a mental illness, intellectual disability or psychosocial disability.

In the Introduction of this report, it states:

1. Mental health and emotional well-being are priority areas of focus for the Special Rapporteur (see A/HRC/29/33). In each thematic report, he has attempted to bring mental health into focus as a human rights and development priority in the context of early childhood development (see A/70/213), adolescence (see A/HRC/32/32) and the Sustainable Development Goals (see A/71/304).

2. In the present report, the Special Rapporteur expands on this issue and provides a basic introduction to some of the core challenges and opportunities for advancing the realization of the right to mental health of everyone. In the light of the scope and complexity of the issue and of the evolving human rights framework and evidence base, in his report the Special Rapporteur seeks to make a contribution to the important discussions under way as mental health emerges from the shadows as a global health priority.

3. The present report is the result of extensive consultations among a wide range of stakeholders, including representatives of the disability community, users and former users of mental health services, civil society representatives, mental health practitioners, including representatives of the psychiatric community and the World Health Organization (WHO), academic experts, members of United Nations human rights mechanisms and representatives of Member States

The World Health Organization is committed to responding to the report’s call for Member States to seek technical assistance from the WHO QualityRights initiative in order to promote access to good quality mental health and related services and respect for the rights of persons with psychosocial, intellectual and cognitive disabilities.

Human Rights Consultant for DAI and ADI, Professor Peter Mittler and DAI Chair and CEO Kate Swaffer have been actively involved in the WHO QualityRights work, and DAI continues to seek your feedback.

If any DAI members wish to become part of a small working group to provide feedback on this project, or need more information, please email us as soon as possible please.

Human Rights: from Rhetoric to Reality, #ADI2017Kyoto

This key note presentation was given by co founder of DAI, Kate Swaffer at the ADI conference held in Kyoto in April 2017. The WHO and others are now taking human rights for people with dementia seriously, this is an introduction about why it is so important, and the role DAI has played in the World Health Assembly adoption of the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva in May.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia – go to www.joindai.org to complete the membership application form

Or you can subscribe to our newsletter or weekly blog by visiting us at www.infodai.org

DAI’s Peer-to-peer support groups

DAI’s peer-to-peer support groups continue to grow and evolve, and following the departure of our global manager earlier this year, we have found that setting up each group with a number of co hosts to manage their own groups to be very effective. It also takes the pressure off of expecting one person to do it, which in hindsight was too much work for one person, but it also reduces the risk of the groups ‘falling over’ if that person gets sick or resigns.

These groups are truly empowering and supportive and our updated flyer about them can be downloaded here to share: DAI Global Peer-to-Peer Support Groups_2017

If you are a member of DAI and have not joined one yet, or haven’t been for a while, we hope to see you soon. You can email us at [email protected] to join. Last week, this is what I wrote after attending one of our USA peer-to-peer support groups:

“Just finished attending our weekly Richard Taylor support group… we’ve been laughing a lot (and almost crying a couple of times) for over 90 minutes. Discussions on grief and loss that we go through, ‘threesomes’ and the Three Stooges, the recent FTD conference and many other interesting things. Congrats to Jerry Wylie for setting up a local support group in his home town too, we were all truly inspired, and I get the feeling we will all help each other to do the same. We even introduced a young genius (the son of a member) to an older one, our long time friend and DAI support group member Phil… which was amazing.”

This week, our Monday Aussie group shared a video of a young girl who can not only sing, but who plays the piano with her toes as she has no arms; you can watch the video of it at the end of this blog. If any of us felt miserable about having dementia, this certainly motivated us to ditch PLOM (Poor Little Old Me) disease at least for a few moments! We also had a support group member play his guitar and sing his own song written about dementia and stigma, and we laughed and cried, as we shared and supported each other.

Our UK group this week had a new member as well, who was truly amazed how we connect from all around the world, and is going back to advocate that his national organisation get onto zoom so that remote members can participate fully in their national advocacy work! It is always wonderful to see our members empowered to become more active and to live positively in spite of dementia.

Long live Dementia Alliance International.

Frankly, this is the only truly helpful support I have ever received.

Now, what we also need to do it to make sure our care partners, and if we have younger onset dementia, our parents and sons also are provided with the same level of support. Unfortunately, just like people diagnosed with dementia setting up DAI, they may have to do it for themselves…

Finally, the members of DAI are very sorry to hear of Mick and Sue Carmody’s recent very serious health issues, and wish them a speedy recovery, or at least that their health stabilises soon. Our thoughts and love are with them, and their family at this time.

Girl With No Arms Sings & Plays Piano With Her Feet | Romania’s Got Talent | Got Talent Global

Have a great week,

Kate Swaffer, Co-founder, Chair & CEO, Dementia Alliance International

DAI granted NGO status at the COSP

DAI receives new NGO accreditation to the Conference of States Parties to the CRPD

The submission of DAI’s application for new NGO accreditation to the Conference of States Parties to the CRPD (COSP) was formally received on 23 May, 2017. In accordance with the Rules of Procedure of the Conference, our application was forwarded to States Parties to the CRPD, for their review.

At the first meeting of the 10th session of the Conference of States Parties on 13 June (10 a.m. to 1 p.m.), States Parties approved our new NGO application, on a consensus basis. This means we will be allowed to attend future COSP Conferences in our own right. Due to unsecured funding, we were unable to send anyone to New York this year to represent us, although we could have registered under ADI. Next year, we will be sure to find secure funding in time to attend! This is a portion of the acceptance email we received:

Congratulations! Your application for new NGO accreditation to the Conference of States Parties to the CRPD has been approved by consensus at its first meeting at the 10th session on 13 June, in accordance with the Rules of Procedure of the Conference. 

The list of newly accredited NGOs is copied below, and will also be published in the final report of the 10th session of the Conference of States Parties to the CRPD...

List of non-governmental organizations accredited to the Conference of States Parties to the Convention on the Rights of Persons with Disabilities on 13 June 2017:
 
1. AbleThrive
2. Access Exchange International (AEI)
3. Action on Disability Rights and Development (ADRAD)
4. Alhassan Foundation for Differently Abled Inclusion
5. Associação Nacional de Membros do Ministério Público de Defesa Dos Direitos dos Idosos e Pessoas com Deficiência (AMPID) (National Association of Members of the Public Prosecutor’s Defense of the Rights of the Elderly and Persons with Disabilities)
6. Atfaluna Society for Deaf Children, ASDC
7. Benemérito Comité Pro Ciegos y Sordos de Guatemala (Meritorious Committee for the Blind and Deaf of Guatemala)
8. Cambodian Disabled Peoples Organisation (CDPO)
9. Center for International Stabilization and Recovery
10. Dementia Alliance International (DAI)
11. Disabled Peoples’ International – Europe (DPI-E)
12. Disabled Peoples’ International Korea
13. Dream for Disability Foundation
14. The Family Resource Network Inc.
15. Federação Brasileira das Associações de Síndrome de Down (FBASD) (Brazilian Federation of Down Syndrome Associations)
16. Fight the Stroke
17. Fundación Descúbreme (Discover Me Foundation)
18. Fundación Dime, A.C. (Dime Foundation)
19. Instituto ser educacional (Educational Institute)
20. International Disability Alliance
21. International Dyslexia Association (IDA)
22. International Society of Physical and Rehabilitation Medicine (ISPRM)
23. Kids Brain Health Network
24. Kpakpando Foundation for Physically Challenged Persons
25. Markaz-e-Umeed for Special Needs Children – Pakistan
26. National Federation of the Blind (NFB)
27. New South Wales Consumer Advisory Group -Mental Health Inc.
28. New South Wales Council for Intellectual Disability
29. New World Hope Organization
30. Potohar Mental Health Association (PMHA)
31. Progetto Filippide (Philippine Project)
32. Sierra Leone Campus Civitian International
33. Swedish Disability Federation
34. Tangata Group
35. The Lucy Foundation
36. UCP Wheels for Humanity
37. Women Enabled International
38. Women’s Refugee Commission

We are now in the process of creating our DAI profile in CSONET which then means we will be able to register our representatives for future Conferences of States Parties to the CRPD. We will also be applying for Consultative Status with the ECOSOC now that we have been accepted as an NGO.

IT’S OUR CONVENTION: USE IT OR LOSE IT? by Peter Mittler

The article below was written by Professor Peter Mittler as a Guest Editorial for the Disability, CBR and Inclusive Development journal,  published in 2012 for people to promote Community Based Rehabilitation (CBR) for all people with disabilities in Low and Middle Income countries.

However, it is now very relevant for the same reason for people with dementia in all five continents. Peter is an Emeritus Professor of Special Needs Education, University of Manchester, UK, and a former President of Inclusion International and UN Consultant on disability and education. He is also a DAI member and the current Human Rights Consultant for both DAI and ADI. Thank you Peter for suggesting we share it here. It has taken a few days, as copying from a PDF means many letters are missing from words, so time has been needed for editorial accuracy. If I’ve missed any, please let us know [KS]!

Abstract

Unless action is taken now, at national and local levels, to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities. Although many governments have signed and ratified the Convention, evidence of actual implementation is an immediate priority, especially in the midst of a global recession.

The scene is now set for governments to bring their policies into line with the principles and Articles of the Convention and to provide regular reports to the Disabled Persons’ Commi ee of the United Nations High Commission on Human Rights. Use of the internet can ensure that accountability is made public and includes the full participation of people with disabilities.

INTRODUCTION

“If the demands of justice have to give priority to the removal of manifest injustice (as I have been arguing throughout this work) rather than concentrating on the long-distance search for the perfectly just society, then the prevention and alleviation of disability cannot but be fairly central in the enterprise of advancing justice” (Amartya Sen, The Idea of Justice, 2009, p. 259).

“The Convention on the Rights of Persons with Disabilities is only as good as its implementation. And even though countries are competing with each other in a race to ratification, its implementation thus far is abysmally poor” (Javed Abidi, Chairperson, Disabled Peoples’ International, 2011).

“We are the leaders of today. We have broken the status quo. And within the next five to ten years you will see persons with disabilities being leaders, being ministers, and ultimately holding the position of president in our countries” (Seray Bangura, Sierra Leone Young Voices, 2012).

Unless immediate action is taken at national and local levels to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities.

The passing of the CRPD into international law in 2008 marks the culmination of decades of struggle by people with disabilities to ensure that their basic human rights as citizens are respected and the barriers to their participation in society are removed. The UN has set the scene and is doing what it can to persuade its member states to translate its principles into practice. However, Disabled Persons’ Organisations and their supporters in civil society must now put pressure on national governments to implement the Convention. The fact that the Convention has coincided with a global economic recession creates a new urgency to turn rights into realities.

THE IMPORTANCE OF THIS CONVENTION

The struggle for disability rights began as part of the wider civil rights movements of the 1960s. In 1980 it ‘went global’ at the now historic Rehabilitation International Conference in Winnipeg, when people with disabilities decided to form their own association which became Disabled Peoples’ International a year later (Driedger, 1989). DPI received strong support from the United Nations which had just launched its International Year of Disabled Persons. Since then, DPI, working with other international disability organisations, has played a leading role in shaping UN policy, starting with the World Programme of Action for Disabled Persons, the Regional Decades and the Standard Rules on the Equalisation of Opportunities for Disabled Persons. The Rules were influential, but lacked the force of law and international accountability now provided by the Convention.

The Convention does not aim to create new rights for people with disabilities but validates their full and equal access to the Universal Declaration of Human Rights promulgated in 1948. It was necessary in the light of overwhelming evidence of their exclusion from these rights, in all countries of the world. This exclusion will continue unless action is taken to implement the Convention.

The Convention was the first to include members of Disabled Persons’Organisations (DPOs) as full and equal participants at every stage of its development, together with politicians, professionals and officials. Their participation is relected in the adoption and application of the social model of disability which highlights the wide range of obstacles confronting the rights of people with disabilities, and ways in which these can be overcome. The international disability NGOs continue to work together as members of the International Disability Alliance, which is actively promoting the implementation of the Convention and has produced detailed guidelines for monitoring and advocacy (IDA, 2010).

The United Nations and the wider international community now recognise disability as one of the major inequalities faced by people in all societies, along with inequalities related to poverty, gender and membership of a minority group. Consequently, the Convention now places an obligation on all United Nations agencies and organisations to ensure that people with disabilities are included in all policies and development programmes, and particularly in the eight Millennium Development Goals in which their needs were not explicitly identified or included in monitoring criteria. Since one-third of the 77 million children still excluded from school are children with disabilities, it is self-evident that the goal of universal free primary education for all by 2015 cannot be a attained if their rights continue to be overlooked.

The United Nations Development Group (2011), which coordinates the work of 25 UN agencies at regional and country team levels, has issued detailed guidelines on strategies and mechanisms to ensure that people with disabilities are included in the whole range of UN-sponsored aid and development programmes from which they have previously been excluded. This document encourages UN country teams to work closely with Disabled Persons’ Organisations. In addition, the UN is also working to ensure that people with disabilities are not overlooked in emergencies and humanitarian disasters, and has published a CRPD advocacy tool kit with particular reference to ensuring support to survivors with disabilities caused by landmines and cluster bombs (United Nations, 2008). The rights of people with disabilities also have to be taken into account by government reports on all other UN Conventions, sent to the O ce of the High Commissioner on Human Rights – for example, those concerning women, children, torture, racial discrimination and civil and political rights (OHCHR, 2010).

The 2013 UNICEF State of the World’s Children report (UNICEF, in press) will focus on children with disabilities and provide up-to-date information and examples of progress in all countries. This follows earlier reports, including Promoting the Human Rights of Children with Disabilities (UNICEF, 2007) and a child-friendly version of the Convention (UNICEF, 2008).

A comprehensive World Report on Disability has been published by the World Health Organisation and the World Bank (2011). The report takes the principles and priorities of the Convention as its starting point and provides a wealth of information with special reference to low and middle income countries. Consistent with the social model of disability and the International Classification of Functioning, Disability and Health (WHO, 2001), it emphasises environmental factors in creating disability, identifies obstacles to the expression of rights and to the development of services, and provides many examples of ways in which these obstacles are being removed or at least confronted by countries at all stages of development. It has been followed by an equally informative world report on dementia (WHO and Alzheimer’s Disease International, 2012), again with particular emphasis on the health implications of an ageing population for middle and low income countries.

CONVENTION PRINCIPLES

The Convention is based on a number of fundamental principles which can be used for purposes of monitoring or accountability: These include:

  • Respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
  • Non-discrimination
  • Full and active participation and inclusion in society
  • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  • Equality of opportunity
  • Accessibility
  • Equality between men and women
  • Respect for the evolving capacities of children with disabilities and respect for the rights of children to preserve their identities.

MAIN ARTICLES OF THE CONVENTION

The core articles of the Convention address substantive issues of importance for people with disabilities of all ages. Each focuses on speci c domains in which barriers to participation are experienced by people with disabilities, and lays down broad principles and policies for their removal. These include:

Women; children; awareness raising; accessibility; right to life; situations of risk and human emergency; equal recognition before the law; access to justice, liberty and security of the person; freedom from torture, cruel, inhuman or degrading treatment and from exploitation, violence and abuse; protection of the integrity of the person; liberty of movement and nationality; living independently and being included in the community; personal mobility; freedom of expression and opinion and access to information; respect for privacy and home and family; education; health; habilitation and rehabilitation; work and employment; adequate standards of living and social protection; participation in social, political and cultural life, recreation, leisure and sport.

HOLDING GOVERNMENTS ACCOUNTABLE

The scene is now set for national governments to be accountable to their own citizens, and for people with disabilities to insist on their right to participate in the process of national implementation.

Since its adoption by the UN General Assembly in 2006, 153 countries have expressed their broad agreement with the principles of the Convention by signing it. The 113* countries that have since proceeded to ratify it now need to be commi ed to a time-tabled plan of action to implement each Article of the Convention. Countries that have neither signed nor rati ed it should be held to account and pressed to do so. Up-to-date information on the status of all countries in relation to the CRPD can be found on the UN and IDA websites.

Ratifying States accept a number of general obligations to:

  • modify or repeal laws, customs or practices that discriminate directly or indirectly against people with disabilities
  • include disability in all relevant policies (mainstreaming)
  • refrain from any practice inconsistent with the CRPD
  • consult with people with disabilities and their organisations in implementing the CRPD.Consistent with the social model of disability the Convention, as well as many existing examples of national legislation, also imposes obligations on both public and private authorities to make “reasonable accommodations” to all relevant aspects of the environment so as to enable people with disabilities to exercise their rights. Guidance documents have provided examples of accommodations that might be considered reasonable and unreasonable (OHCHR, 2007).

MONITORING

Since Conventions incorporate international law, the UN provides a comprehensive framework for monitoring and accountability. Accessibility of the internet ensures that this process can take place in the public domain, rather than in closed committees or official reports. Monitoring tools are increasingly available in accessible language (Inclusion International, 2008; Equalities and Human Rights Commission, 2010; World Blind Union, 2012). Both the High Commission (OHCHR, 2010) and the International Disability Alliance (2010) have published helpful guidelines on the preparation of civil society submissions, stressing that they need to refer to the specific principles and Articles of the Convention in framing their comments.

All ratifying states have to submit regular reports on their progress to the new Disabled Persons’ Committee of the UN Office of the High Commissioner for Human Rights which has overall monitoring responsibility for all UN Conventions. In addition to reports submi ed by governments, the committee is open to submissions by non-governmental and civil society organisations. These are published on the internet, together with the Committee’s own report and recommendations on the degree to which the Member State is compliant with the Convention. Since the Committee’s recommendations are not legally binding, it is important for national organisations of persons with disabilities to use and publicise the Committee’s findings in their advocacy campaigns.

A press release and full report of the Committee’s conclusions and recommendations relating to individual countries can be found on the OHCHR website. The Committee has already published its findings on Peru and Spain and will consider reports from Argentina, Hungary and China (with Hong Kong and Macau) in September 2012. Some sessions can be watched live or viewed via the IDA website, which also includes a link to the Hungarian national disability consortium’s response to the policy of their government.

In the case of Peru, the Committee commended the government for its dra bill on the rights of persons with disabilities, the adoption of a law on sign language and an increase in funding for programmes for persons with disabilities, but expressed strong criticisms concerning forced sterilization as a method of contraception and the fact that 81 % of people with disabilities had no rehabilitation services and only 1.42 % were covered by social security programmes. The Committee also expressed its concern about the forcible use of medication and the poor conditions in psychiatric institutions where some persons had been institutionalised for more than ten years without appropriate rehabilitation services.

The report on Spain commended the adoption of a new long-term strategy (from 2012 to 2020) including objectives over the short and medium term, and welcomed the high percentage (78.35%) of enrolment of children with disabilities in the mainstream education system. Recommendations included measures to ensure the active participation of persons with disabilities in public decision-making processes, including the right to vote at the regional level and the inclusion of children with disabilities at all levels, and a more comprehensive consideration of women and girls with disabilities in public programmes and policies, in order to promote their autonomy and full participation in society and to combat violence against them.

The Commttee has a backlog of reports from Austria, Azerba an, Bahrain, Belgium, Brazil, Bulgaria, Cook Islands, Costa Rica, Croatia, Czech Republic, Dominican Republic, Ecuador, El Salvador, Finland, Germany, India, Indonesia, Mexico, Mongolia, Morocco, Netherlands, Paraguay, Philippines, Poland, Republic of Korea, South Africa, Sweden, Turkmenistan and the United Kingdom. All these reports will be on the OHCHR website and should also be in the public domain at national level. Therefore, there is still time for NGOs in all these countries to make independent representations to the Commi ee.

Optional Protocol

The Optional Protocol, which has so far been rati ed by 65 States, enables individuals or groups of individuals who believe that their rights are being violated to submit a complaint to the Disabled Persons’ Commi ee. In addition, it gives the Commi ee the authority to examine grave or systematic violations of rights under the CRPD. DPOs can use both of these procedures to report on violations of rights under the CRPD (OHCHR, 2010; International Disability Alliance, 2010).

The Committee has received its first complaint from an individual under the Optional Protocol, and supported her objection to a Swedish municipality’s refusal of permission to extend her property for installing a hydrotherapy pool, considered essential to her treatment and rehabilitation programme (CRPD/ C/7/D/3/2011).

AN AGENDA FOR CHANGE

Over the last 50 years there have been many recommendations to implement sustainable policies, designed to support people with disabilities to take their rightful place in society. Although significant progress has been made in many parts of the world, including some of the poorest countries, there is still abundant evidence of people with disabilities being ignored and marginalised everywhere. The Convention therefore provides a unique opportunity for every country to do a rethink about the quality of life of its citizens with disabilities, and to make a fresh start in xing its priorities. This is not only a task for all governments, but also a challenging opportunity for citizens.

Since the 1981 International Year of Disabled Persons, the UN and NGOs have highlighted a number of priority areas which have proved e ective in countries at varying stages of development.

1. Develop a National Disability Strategy

Governments should be urged to create a high-level focal point for disability, responsible directly to the Head of State or Prime Minister, who should publicise their full commitment to promote the rights of all citizens with disabilities and to combat discrimination at every level. These are already working well in some countries, including the Philippines, Japan, Turkey and South Africa.

This group should be entrusted with the development of a Convention Implementation Programme as one element of an overall national disability strategy, with clear targets, time-frames and mechanisms for monitoring and accountability at local levels.

The group must include a representative consortium of national DPOs. These must be granted time and resources to meet in accessible environments before and between meetings, in order to develop a common strategy. It goes without saying that all documents and proceedings have to be accessible to all participants.

In addition to high-level representation from ministries with existing responsibilities, such as health, education, employment and social welfare, other ministries such as nance, housing, transport and justice will also need to commit to a comprehensive national strategy.

Information about the work of this coordinating commi ee should be reported to Parliament and to regional and local bodies, and be freely available on the internet, preferably in an interactive form so that members of the public can express their views.

2. Support People with Disabilities and their Organisations

At the heart of the Convention lies the participation of people with disabilities in the process of reform. This involves much more than inviting them to join commi ees. It calls for support and strengthening of DPOs, and the creation of a climate of debate and discussion of a kind which brought the UN Convention into being in the rst place.

3. Promote Access to Mainstream Services

Each public and private agency needs to conduct an audit of its buildings, facilities and procedures with a view to removing barriers to participation. This can be done with the help of DPOs with experience of access audits based on the needs of people with a wide range of physical, mobility, sensory, cognitive and mental health impairments. These are already active in many places like Malaysia (WHO and World Bank, 2011, p. 176) but could be replicated more widely given the opportunity. Governments should also support the development of access standards for all services and amenities available to the general public, including vocational and professional training.

Incentives for Universal Design should be put in place, whereby provisions for access are incorporated into the original speci cations for pavements, buildings, transport and other amenities. Most personal computers already include basic access so ware, but people with disabilities should be able to receive additional so ware needs free of charge.

4. Improve Services for People with Disabilities

Global surveys such as those carried out by WHO (2007, 2011) make it clear that no country can be satis ed with the quantity or quality of the supports and services provided for its citizens with disabilities.

While access to mainstream services is fundamental, many people with disabilities will always need supports and services to use them. These include not only low vision, hearing and mobility aids, but also personal support for people with intellectual and mental health impairments, to help them become more independent as well as contributing members of their community.

5. Develop Appropriate Quality Assurance Processes

There have been reports of poor quality services, inhumane treatment and abuse of people with disabilities even in countries with highly developed provisions. This is despite elaborate quality assurance mechanisms and inspections by organisations funded by government or professional bodies.

Quality assurance is essential but a balance has to be struck between procedures and guidelines agreed between service providers and their clients on the one hand, and national standards imposed from the centre on the other. Accountability must be to individual service users who have to be at the centre of decision-making, and must be supported if they wish to make a complaint. Organisations of people with disabilities are increasingly involved in quality assurance and accreditation processes, but should be more fully supported in evaluation of services and supports.

Two very different but complementary approaches to quality assurance have just been published. A new WHO Qualityrights Toolkit (WHO, 2012) provides detailed guidelines for the assessment of a range of mental health and social care facilities in all countries, by NGOs and human rights organisations as well as accreditation agencies and government bodies. Assessments are carried out under ve broad thematic headings, each based on relevant articles of the CRPD. For example, theme 5 focuses on Article 19 which deals with four components of ‘the right to live independently and be included in the community’.

In contrast to evaluations which focus on services and sta , Verdugo and his colleagues (2012) have come out with a proposal to assess the impact of the Convention by asking those whom it is intended to bene t about their Quality of Life (QoL), drawing on three decades of international research in which QoL measures have been developed with populations of persons with disabilities, the elderly and the disadvantaged. Their paper demonstrates that the eight domains identi ed by QoL research can be both conceptually and operationally related to speci c Articles of the Convention (Verdugo et al, 2012).

6. Develop a National Training Strategy

Since many staff lack appropriate quali cations, the training and retraining of sta at all levels can be seen as an investment in human rights.

A national and regional state development and support strategy has been shown to be an indispensable component of reform. Priority should be given to locally-based sta who are in daily contact with persons with disabilities and their families. Education, health and community workers may need support in extending their skills to these people, or may be prevented from doing so by discriminatory practices or a itudes. They in turn need support from more experienced itinerant multi-disciplinary teams who themselves need access to refresher courses to update their knowledge and skills and to provide leadership in changing outdated attitudes and practices. National or regional centres for advanced study, research, training and dissemination are also needed.

People with disabilities can make a major contribution towards training, but to do this systematically they need to be paid, supported and treated as experts in the same way as other contributors.

Community-Based Rehabilitation

CBR is more relevant than ever in the light of the new imperative to implement the Convention. It is now the accepted strategy in 90 countries, providing supplementary training to health, education or social welfare sta who already work in the community but o en lack the con dence to extend their skills to people with disabilities. WHO has recently published radically revised CBR Guidelines on the basis of experience and evaluation in many countries (WHO, UNESCO, ILO & IDDC, 2010).

Equally important is a well-designed strategy of providing awareness, information and con dence to people working in general community services who may have only occasional contact with people with disabilities but whose a itudes and actions are critical to the lives of these fellow citizens. This includes the whole range of health, social welfare and education professionals, as well as public o cials, the police, the judiciary and the media.

7. Public Awareness

Perhaps the biggest obstacle to the participation of people with disabilities is society’s persistent under-estimation of their ability to do so. Implementing the Convention provides an opportunity to promote a more inclusive society (Mi ler 2010, 2012).

People with disabilities are their own best ambassadors, especially when the general public becomes aware not only of their presence but also of the contribution that they can make to the community once barriers to their participation are removed.

Full involvement of the media is essential at a number of levels. These include awareness-raising about the rights, abilities and achievements of people with disabilities of all ages, in contrast to portrayals which re ect a charity or welfare model. The media should be provided with accurate and up-to-date information about government policy and its progress in implementing the UN Convention in ways which will have a direct and positive impact on the lives of people with disabilities and their families.

8. Think Regionally

The power of regional networks and partnerships has been demonstrated in the UN Decades of Disabled Persons, with the Asia-Paci c region launching its third decade in 2013. All are strongly supported by UN regional o ces and by the UN Development Group. Most of the international disability NGOs such as DPI, Inclusion International, World Blind Union, and World Federation of the Deaf also have a strong regional base and should now be fully supported by UN regional o ces. The European Union and most of its member states have rati ed the Convention and is in dialogue with a very active European Disability Forum.

CONCLUSION: CONFRONTING THE ECONOMIC CRISIS

Seeing an agenda for change in the midst of a world economic crisis is likely to meet with resistance.

We are used to governments – and even the United Nations in earlier days – using phrases such as ‘within existing resources’ or ‘as resources become available’, which is usually an excuse for doing li le or nothing. Such language is unacceptable where fundamental human rights are concerned. Few politicians would now say that there is no money for the education of girls, so how can lack of resources be used as a justi cation for the exclusion of girls and boys with disabilities from education?

The UN knows that its 190 member states are at vastly different stages of development and that implementation of this Convention will require resources, especially for countries with limited provision for all its citizens. That is why the Convention speaks of the need for evidence of “progressive realisation” of its principles and policies. That means targets, time-lines and accountability. Good intentions or even legislation are not enough.

The Convention was drafted by realists and ratified by politicians in full knowledge that it had resource implications. However these should not be exaggerated. Many resource-poor countries have made remarkable progress by harnessing community support and by judicious investment in human resources, including people with disabilities themselves. Resources tied up in institutional provision can be responsibly diverted to community services. People with disabilities, considered as ‘the poorest of the poor’, have become economically active as a result of job creation and start-up loans.

People with disabilities are not asking for a disproportionate share of resources but they do want to be given opportunities to develop what the economist-turned- philosopher Amartya Sen has called their ‘individual capability’ – a wish expressed by the novelist Katherine Mans eld many years earlier when she wrote, “I want to be what I am capable of becoming”. Such a wish is universal but is particularly apt for people with disabilities.

* 173 countries have now ratified the CRPD

You can download the article as a PDF here: UN Convention_Use it or Lose It_DCID July 2012_Peter Mittler (2016_07_08 11_51_56 UTC)

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We need to ‘Think Outside of the Box’ by John Quinn

A few weeks ago at the ADI2017 conference in Kyoto, DAI and DAAT member John Quinn  gave a great presentation  We Need to ‘Think Outside the Box”, especially in relation to rehabilitation enablement and dementia. Thank you John for allowing us to showcase it here.

His power point slides can be downloaded here  We need to ‘Think Outside of the Box ’_John Quinn_ADI Kyoto2017 and his full speech notes are below:

“A friend of mine was diagnosed with Fronto-Temporal Dementia. He used to be a truck driver and tinkered with cars and engines most of his life. But only 18 hours after he had MRIs etc that resulted in his diagnosis, he lost his licence. He felt that his whole life had shattered. At the time, he was in his mid 40s, with four children. His wife had to return to full time work to continue paying off the mortgage and to support the family. But by the time he was 50 years old, when his youngest child was 7 years old, he was placed into a Care Facility, because there was no one at home to care for him. The average age of the other residents was about 85 years old. He felt hopelessness… and also a failure, because he couldn’t provide for his family.

There was no immediate rehabilitation for him, however; soon afterwards, his friend told him about a group of men who were rebuilding an antique truck. Years later, they still catch-up every week to work on this project together. Now he is proud of what he is achieving albeit small steps. In time, the organisers hope that there’ll be a restored, functioning, antique truck available for street parades, TV advertisements and movie sets.

This is an example of what rehabilitation might look like. OR is it enablement? OR… is it empowerment?

In some health areas, for example with various forms of addiction, the word enablement has different connotations than in the Dementia arena, so we must be mindful of the meaning of words here, too. Also, I’ll later refer to how I felt disempowered by others, then later with time and unexpected support, regained the sense of feeling empowered. Some of us who live with Dementia are advocating for the correct use of language in the media and within our Communities. Perhaps here is another area where better awareness of language can improve our lives. Whatever the correct word is, the result should be better outcomes for people living with Dementia. Here in this context, for simplicity, I’ll use Rehabilitation and Engagement interchangeably. However, it will only be effective if it empowers us.

In an ideal world, some types of rehabilitation relevant to the person’s current life and the personal symptoms of Dementia should be offered at the time of diagnosis. Everyone has a Right to Rehabilitation to his or her changing abilities, BUT let’s not dismiss ANY type of rehabilitation. We need to ‘Think Outside of the Box”, for the best outcomes to empower us. Everything with value will be valuable!! Who determines what is valued? I believe that it must be the person with the diagnosis in the first instance. This type of conversation and the ensuing negotiation is relevant regardless of the age of the person living with Dementia.

However, it is more important when someone young is diagnosed, as there is an emerging realisation that when a younger person is diagnosed with Dementia at the earliest opportunity, there will be a longer period of successful engagement with his or her current lives. Immediate support and contact with someone who can guide the person living with Dementia and their family through this tumultuous life-changing period, would maintain some hope for the possibilities for the future; and, feelings of being valued as a person who can still contribute to their family and society.

At least in my own case, I believe that I still could have had a sense of purpose and self esteem… But I lost them when I lost my career. The career that I loved and was respected in, had taught me skills and knowledge for 35 years. Yet suddenly, in 2008, I not only couldn’t do it due to my symptoms, I didn’t have the opportunity to return to it with support or adaptations post diagnosis.

Interestingly, for the past two years, with encouragement and lots of support, I’ve been able to use those skills that I learnt throughout my lifetime in my career… in my advocacy. This advocacy has also opened many new pathways and opportunities for me, that I couldn’t have envisaged, and I value that. Through my advocacy, I’ve met new, genuine lifelong friends; I’ve had the opportunity to meet with people who inspire many; and I’ve been to places that I wouldn’t have considered before. I’ve regained a passion, a focus and a purpose again. Prior to this, I’d felt that everything about who I was, had been taken away from me…..by Dementia, and by the responses of those who could have offered support if they’d only looked at me as the person who I was…………not just as Dementia.

I can’t learn new things easily. I get lost in the process and if I do manage to learn new things, it takes an enormous amount of time and effort on my part, and patience by others. However, I still had, and still have, many skills and expertise in particular areas that the post-diagnostic model forgot to address or encourage. In my case I was an educator…..a School Principal or Deputy Principal of large Primary Schools. Therefore, I spent my adult life in education, learning new things and mentoring others; encouraging both the students and fellow educators to engage in learning skills and knowledge for a successful life. In other words, life long learning

But who else was I? What else was I passionate about?

I’ve always been a caring person and a family man.

But also, what comes to mind is my interest in active participation in sports. I not only trained and encouraged the students in a number of sports, at the school that I was at, but I also enjoy being a spectator of many sports.

During the last 25 years, I’ve run 3 marathons, about 20 half-marathons, a triathlon, and 30 charity fun runs, so as you can imagine I’ve always been reasonably fit. However, I have also participated in many challenging feats in recent years since my diagnosis, such as the Great Wall of China half-marathon, and climbed Mt Taranaki in New Zealand. In addition, since I started being involved with advocacy, I’ve also used my athletic ability to raise much needed funds and awareness in 2 separate challenges…..cycling through Vietnam and Cambodia after buying a bike when I couldn’t drive any longer; and walked our second Camino de Santiago, 825 kms from France across the top of Spain. Whist I could do the physical challenges they wouldn’t have been possible without the support of others, particularly my partner Glenys who did the planning, organisation and problem solving to ensue that I was able to successfully undertake these events.

So each one of us already had expertise, interests, and passions prior to our diagnosis, which if acknowledged and carefully nurtured and encouraged, can enable us to remain independent and interested in engaging in our future lives, albeit with some adaptations and support where necessary.

We need to look beyond the deficit model of what we can’t do, and instead look at the skills and knowledge that we already have. Board-certified Internist and Geriatrician, Dr Allen Power agrees…In his book ‘Dementia Beyonds Drugs’, he states…“Although there are cognitive deficits, many complex abilities are already preserved, which should be identified and cultivated”…..Others in the medical field; allied health professionals; Governments and organisations; and, our family and friends, need to get on board with this concept to encourage us to maintain our skills; and, provide individualised personal programs and career support, so that we can continue to be independent for as long as possible.

I already know what I can’t do. I knew about them years before I received an accurate diagnosis. I’m reminded of them daily when I get confused or frustrated, knowing that everyone is thinking at a different speed and level. I am particularly reminded of them, when I travel; have the rare late night with my son at the football; or, after the many social interactions that occur throughout each day. And strangely, I’m subtly reminded of them when some people challenge my diagnosis, because I can interact with others and I’m reasonably fit, therefore don’t look like I have Dementia. However, they don’t see how I can’t function for hours, after engaging in most activities.

Please don’t misunderstand me though. The type of rehabilitation that people usually think of, is also very important, for example, Occupational Therapy, Speech Therapy, Physiotherapy. However, when it’s Dementia, aren’t these therapies really enablement? I’m never going to rehabilitate back to close to my former self, as I may have after a stroke or heart attack.

In about 2011, after my diagnosis, Glenys said to my neurologist that she was aware that there are Speech Therapists who specialise in rehabilitation after a Heart attack or Stroke. She questioned whether there was one who specialised in Dementia, to hopefully provide some strategies and knowledge that we didn’t have, that might assist us in our daily communication……His reply was that he’d never been asked that question before.

There have been some changes though. This time last year, we were asked to give the Consumer Perspective to the Australian Federal Minister for Health on a new government document for People with Dementia. This document has some excellent points enmeshed in the 109 ‘Principles of Care’.

There are two references to accessing Speech Therapists…..But we also need speech/language therapy for people who have word finding, processing problems, or other language concerns etc, like I have?

The medical profession needs to consider authentic rehabilitation which is vital for younger people living with dementia or those early in the dementia process. Are some attitudes because dementia is a terminal condition for which there is no cure? I don’t know…..However, through my involvement on a national committee where up to 40 different research activities are currently happening, I’m aware that there’s some good, innovative research that includes a focus on empowerment. So there’s emerging hope for a change in attitudes.

I have personally done a little research on what can impact on the progression of Dementia and what keeps our brains healthier…..things like the effects of music; and learning new languages and skills. As a result I’ve formed an acronym….It’s my N.A.M.E.S……names….N for Nutrition; A for Attitude and Acceptance; M for Mental activities, Music and Meditation; E for Exercise and Enjoyment; and S for Support, Sleep, Socialisation, and Setting Goals. Some of the activities that I engage in for my NAMES, include, learning Spanish; doing crosswords with my non-dominant hand; volunteering each week; advocating; writing to the Editor of the local newspaper; and, writing a blog. My N.A.M.E.S. keeps me on track to do what I believe will help me.

I want you to consider these questions. What value do our existing skills hold? What value is there in learning through experience rather than in isolation, for example, in a one-on-one class with a therapist? What value do we place on participation with fun, social engagement? How can we be empowered through support and opportunity to live as independently and as fulfilling a life as possible? I’ll finish with another quote by Dr Allen Power, in “Dementia Beyond Drugs”. Well-being is not dependent on cognitive and functional ability and should be maximised in all people. There has to be a paradigm shift in the way we view people with Dementia

Thank you.”