Proceedings of 2nd African Conference held in Johannesburg 2005

REPORT ON THE “PEOPLE AND FAMILIES FIRST” 2nd SOUTHERN AFRICAN CONFERENCE ON DOWN SYNDROME AND INTELLECTUAL DISABILITIES

29TH September – 1st October 2005

By MAGDA LOURENS – DSSA Executive Member and Conference Organising Committee Member.

'Life is not measured by the breaths we take, but by the moments which take our breath away.' And this was exactly my experience at the 2nd Southern African Conference on Intellectual disability. This conference was filled with many such breathtaking moments which impacted on and enriched my life.

The conference, a dream of our chairperson Vanessa dos Santos, was held at the Birchwood conference centre. The conference organisers made sure that it had a distinct local flavour and was definitely aimed at addressing the needs and issues regarding Intellectual disability and the impact it has on the lives of families in Southern Africa.

I never seem to get tired of the sounds and rhythms of Africa and the African drummers added a special primitive touch to the conference. They entertained the delegates at the conference opening and involved some of the young adults with Down syndrome in the drumming and the dancing. We all felt like joining in the festivities!! What a way to start a series of three great days!!

The conference was officially opened by Lucy Monyane on behalf of the Minister of Education, Mrs Naledi Pandor, who unfortunately could not make it. She congratulated DSSA for arranging this conference and carrying the torch for not only children and adults with Down syndrome but also for all other persons who are intellectually disabled. Furthermore she urged all roleplayers to join hands with the Department of Education in breaking the cycle of exclusion that affects children.

Her final wish: “May you inspire and encourage parents and families to create opportunities for children and adults with Down Syndrome and Intellectual Disability to become accepted and valued members of society.” for sure were prophetic words.

Dr Jody Kollapen from the South African Human Rights Commission reminded us of the words of President Thabo Mbeki. “We are a nation of many cultures, languages, ancient customs, etc. We are tied together by a million threads (visible and non visible)……… because we are human!!!” He also stated that people with Down syndrome and intellectual disabilities have the human right to be included in all aspects of life! These words set the tone for the conference proceedings

International guests included Dr Balbir Singh and his daughter Jaspreet from Singapore, Dan Schimmel and Kitt Boel from Denmark, Christy Lynch from Ireland, Lilian Mariga from Zimbabwe, Dr Daniël Weeks from Canada, delegates from Kuwait and a huge delegation from Botswana.

All the above delegates presented papers re their respective areas of expertise. As usual Christy Lynch from KARE in Ireland captured the attention of all the delegates in his talk on how service providers, people with intellectual disabilities and families can work together to ensure “A life of Quality”. Dr Daniël Weeks from the Simon Fraser University, Canada, did a presentation on the tremendous insights which John Langdon Down had into the syndrome that bears his name. Dan Schimmel from Denmark brought it under our attention that Quality of life for people with learning disabilities are not different that Quality of life for all of us. We also learned that life quality is grounded in rights and choices of the individual.

It was also wonderful to see such many delegates from the different Government departments attending the conference. Hopefully the conference was a start in forming partnerships and creating new collaborative programmes in the interest of persons with Down syndrome and intellectual disabilities.

Young adults played a vital role in the conference. With heads held high they presented and thanked plenary speakers in their own words. I was so proud of young adults such as Hayley, Ephraim, Luan, Kosie and Jennifer, who had the guts to speak before more or less 350 delegates at the conference and share stories about their lives and struggles. These stories are printed in the ‘Count us in – our own voice’ section of this magazine. Good going you guys, you are positive role models for not only people with disabilities but for all of us!!!

On the first day a separate workshop was presented which more or less 30 adults attended. They discussed issues influencing their lives such as Feelings and Emotions, Relationships and Friendships, Personal Safety, Reproduction and Sexuality, Employment and Independent Living. These sessions were for the young adults only and I must admit that I [and I am sure many others] were curious and wanted to sneak in for an exclusive view of what they were doing and saying.

Topics which were addressed during the conference in plenary and breakaway sessions were Human Rights re Employment, Protection and Education, Early Intervention, Reproductive rights and Prenatal testing, Speech, Parent empowerment, Sexuality, Inclusive Education, etc.

The African Gala dinner, naturally was one of the highlights of the conference. Prof Anver Saloojee delivered a message from Minister Essop Pahad and the Ditwaba dancing group, entertained the guests with a spread of different dance and art forms. The singer Jennifer Ferguson and her daughter sang a beautiful song and Bennie Palime not only attended the conference and spoke on behalf of the Office on the Status of Disabled People in the Presidency, but sang at the gala event as well. All the delegates, including people with disabilities “networked” till late and friendships were formed.

The conference was officially closed by the Minister of Health, Dr Manto Thlabalala Msimang, who graced us with her presence. She congratulated DSSA on taking the initiative to organise such a much needed conference. Her message “Together we can make a difference” urged all stakeholders to work together towards a better life for people with intellectual disabilities and their families.

In the words of Dr Balbir Singh, the President of Down syndrome International:

“Dear Friends, The Second Southern African conference on Intellectual Disability which was held in South Africa was one of the BEST 'down-to-earth' &'value-added' Conferences on Down syndrome, that I have attended. It was certainly worthy of DSIs endorsement. It was our distinct pleasure & privilege to be associated with & to participate in this excellent Conference. Both my daughter, Jaspreet, & I enjoyed the warmth & hospitality shown by all at the Conference, moreover the camaraderie & passion of delegates from all over was awe-inspiring. Most importantly, we learnt much.

I [ & I am sure all at the Conference] was totally inspired by the efforts of Vanessa, the chairperson of DSSA. Her efforts do not only involve her family, DSSA and persons with DS, BUT all those with special needs. There are much many people can learn from her. Her passion and genuine desire to help is a gift we all aspire for.

I would personally propose & support South Africa hosting & organising the 11th World Down Syndrome Congress [in 2012]. Warm greetings”

Truly a conference which brought people together, empowered families and put South Africa on the international map. I surely was very proud to be a part of such an inspiring and uplifting event.



The following is the input given (resolutions) from the Teenagers and Adults with DS and other Intellectual disabilities who attended the conference

WHAT IS IMPORTANT TO US

Proceedings from DSSA Conference for people with Down Syndrome and other Intellectual Disabilities: South Africa 29 September 2005

“Nothing About us Without us”

Our likes, dislikes and what we want  Love Sport  Hate being inside  Love being free and on the outside  Want world to know we feel strong, tuff and free  Can’t just mess with us  Participate in life  We think we are big and have a lot to say and give to the world  We want to do a lot in the world  Family is important and we want to be with our family  We do get scared and angry and sad but we are also happy  We want good relationships with men and women and the world  We want the world to know that we can feel, think and are free  Want the world to be kind to us  We want to be seen as individuals and if everyone was the same the world would be boring  We have dreams to become someone one day

Feelings and relationships

 Love, friendships and relationships are important  Important to love the right person  First friendship then love  Relationships must start slowly, no rush and must trust  Want choices and long-term relationships  We must be careful of abuse and we must speak up loud when there is abuse in our relationships  We need to have relationships for the right reasons NOT money, abuse etc  There can be jealousy in between people  There should be a free choice whether to marry or not (50%:50) for practical reasons (eg financial)  Love, lots of it to give and receive  Happy to be here and doing these things  Love for families and friends  Want to be loved and cared for by family  “Have a wonderful girlfriend who looked deep into my eyes and fell in love. God will help us be strong”  Thankful to those who care for us  All agreed that relationships are good 100%

What needs to change?

 We feel the staff in care centres prevent us from having relationships (too many rules and “watching”)  Staff also “skinner” about us even if we are just friends  It is a problem to have relationships if one person is living “Ïnside” and the other “Outside”  People laugh at us, don’t want to be with us and don’t ask what we can and can’t do  Workshops need to be caring so that we can express ourselves  Help us to be happy and express our feelings and emotions  Disabled people need to talk out to change the way people see and treat them

Advocacy and the world of work

 People must encourage our dreams  We are self- motivated and have ambition to learn, achieve and belong  Need jobs to feel good and contribute, want proper jobs, pay and will work hard.  Accept us as people first, don’t see the disability first  We can cope with things, we are doing well  Don’t call us names it causes pain, causes people to give up and go to jail  We have skills even if we can’t read and write  Communities who also struggle can support  We are all different and unique and want to be treated like that  Respect is a two way street, we show it so must others  Want to be financially independent  Want job outside  Want people to be as honest with us as we are with them  We need to be understood and not judged and labelled  Don’t make excuses, do the right thing  WHY WHY WHY …question the decisions made about you!!!

Communication

 DON’T WALK AWAY WHEN WE ARE TALKING, it makes us think you think what we say is not important  Want people to listen to us because we are disabled and not treat us like we don’t know what’s going on around us.  Communication is important between people and that can move mountains  “It seems people think we have “squat” to say that is important because we are disabled. They must listen to us.”

The following is the ‘outcomes’ of the main conference

DOWN SYNDROME MAIN CONFERENCE RESOLUTIONS

Broad aims of the Conference

• Strengthen Partnership between Government and Civil Society, consisting of parents, self-advocates and NGOs • Promoting parental participation and self-advocacy • Promoting Dialogue Locally and Internationally about best practice models that promote inclusion • Share information about the latest research and developments in the field of Down Syndrome and Intellectual Disability

The following conclusions have been drawn from the deliberations at the conference and the following are the messages that the delegates want to pursue: Strengthen partnerships with government departments on key areas of concern at national and local level. The good intention of government must be taken beyond conferences such as this. Involving the people at all levels promotes implementation of good government policies. Raise the profile of the rights of people with intellectual disability They should have a right to social integration irrespective of the severity of their disability or the socio-economic class to which they belong.

Coordination of services for families in rural areas • Access to early intervention and stimulation programmes • Access to Early Childhood Development sites as they increasingly become available • Parent mobilisation and support and appropriate medical advice • Support to parent and community-based support groups and organisations and strengthening of networks between service providers • Listening to the real needs of parents and individuals with disability and making available appropriate services– managing the power relationships

Employment • Policy framework and expanded opportunities for people with intellectual disability to have access to work in their communities • Employment Equity extended to people with intellectual disability • Rationalisation of the system of disability grants

State Mental Health Institutions • Conditions in care facilities for people with severe and profound disability need to be urgently addressed • Expanded availability of care and support for children and people with severe and profound disability in poor communities

Education • Facilitating access to schools – both ordinary and special – children should not be out of school if they fail to be admitted to their local neighbourhood school • Strengthen support networks for parents – data base and information • Enhancing standards of education in special schools, especially reading instruction for children with intellectual disability • Utilising expertise in special schools to reach more teachers through district support networks • There is a need for Learning support educators in all provinces. This is one of the most effective support mechanisms to ordinary schools. • How do we make awareness programmes on inclusion available in different areas, because not all the organisations operate in an inclusive way. • Community education about inclusive education and the rights of all children to have access to schools – avoid categorising and stigmatising children and isolating them • Lack of understanding of disability especially amongst teachers is a barrier. There is therefore a need for advocacy around disability issues. • Extending the understanding amongst all stakeholders that the new curriculum, National Curriculum Statement, through its flexibility accommodates all learners irrespective the barrier experienced.

Reproductive Rights • We have come a long way since 1994 in terms of the protection of people with intellectual disability in the area of reproductive rights. • The Sterilisation Act 1998 has addressed the issue in a responsible way and has put in place procedures to protect people with Intellectual Disability. However, it remains important to educate parents and the community about the law and the choices available to person with DS or Intellectual Disability. It is also important to address the issues of children under 18 years of age. • Outrule and monitor the practice of making hysterectomy a condition for admission to residential special schools. • More responsible genetic counselling to parents of newborn babies

Prevention of Abuse and Exploitation • Many people with intellectual disability in very disadvantaged communities are victims of sexual exploitation because of their socio-economic situation. Develop systems of support to be available for people who are destitute • In residential care facilities • In special school hostels • Care and support to orphans with intellectual disability – doubly disadvantaged group • Looking into the serious abuse/exploitation which is arising from the social grants system.

This conference was Supported and endorsed by: South African Federation of Mental Health Disabled Children’s Action Group Office on the Status of Disabled Children Department of Education South African Human Rights Commission Down syndrome International and Sponsored by Department of Health Development bank of Southern Africa Eskom Standard Bank of Southern Africa KPrint