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WORLD DOWN SYNDROME DAY 2020 – A CALL FOR ACTION

On the 21st of March, we are celebrating the World Down Syndrome Day. Unfortunately, the corona virus crisis we are currently facing has left its impact on the different celebrations that were planned. Nevertheless, it remains an important cause to mark and it is good to discuss our responsibilities towards our fellow human beings with Down syndrome and to evaluate the European policies. It is encouraging that 108 Members of the European Parliament signed a declaration that demands better rights for persons with Down syndrome giving an important call to action.
The World Down Syndrome Day was established in 2012 by the United Nations, although it had been observed since 2006 in many countries around the world. Consequently, a resolution was adopted at the United Nations that formally established the 21st of March as a day of celebration for the rights of people with Down syndrome. This day signifies the uniqueness of our fellow citizens with the triplication of the 21st chromosome, a genetic disorder known as Down syndrome. It is an opportunity for all of us to think if we are doing enough for persons with disabilities.

For me, every life is worthy to live and every human being’s existence matters. This applies especially to persons with disabilities. People with special abilities are an indispensable part of our societies even if they have a physical or mental disability. One issue of big concern is the misuse of Non – Invasive Prenatal Blood Tests (NIPT), which has lead to an increase of abortions of babies with Down syndrome. For example, an article published on the Gènéthique website last year showed that in the United Kingdom the number of  babies with Down syndrome that were aborted, increased by 50% over a decade. Three years ago, ECPM had raised the issue during the celebration of the World Down Syndrome Day at the European Parliament. We made a statement against the use of NIPT as a tool against Down syndrome. Important technological advances like NIPT should be instead used for conditions that can successfully be treated in the womb. Therefore, tests that target Down syndrome and encourage abortions should be stopped and their use must be regulated. We need a Down-friendly society, not a Down-free society.

Besides, all European Union member states have the obligation to uphold the rights of persons with disabilities. This obligation stems from the membership to the UN Convention on the Rights of Persons with Disabilities(called UN Convention hereafter). Member states must take bold steps to enhance the individual autonomy of people with physical disabilities as well as of those with intellectual disabilities. This means pursuing educational policies that entail inclusive educational programs. These programs ensure that all students, regardless of ability, are accepted as equal members of their school community. They give students the opportunity to participate alongside peers in activities.

Moreover, we should also do more to enhance the representation of people with disabilities in political institutions, even those with intellectual disabilities. Of course, there are not any easy solutions in this sphere. However, a consultation process within member states must be initiated.

Children and adults with Down syndrome have a special worth and an inherent dignity. They have a special contribution to our societies. We must all find ways to make our societies more inclusive and friendly for people with Down syndrome. They are a source of joy for all of us and a valuable element of the fabric of our societies.

European Declaration

It is therefore encouraging that 108 Members of the European Parliament, from across the political spectrum and coming from over 26 countries, signed a declaration that demands that persons with Down syndrome are treated in fairer way. The declaration calls on governments and EU institutions to support autonomy rising projects such as inclusive educational programs, independent living projects as well as health research programs with therapeutic goals. 

The co-signatories further demand that the rights of persons with disabilities and the UN Convention are mainstreamed in all European policies and programs, including on health, employment and inclusive education. Finally, the declaration calls to respect and promote the individual autonomy of persons with
physical disabilities and intellectual disabilities. 

World Down Syndrome Day also highlights the daily challenges persons with Down Syndrome have to cope with. They should not face discrimination be it in employment, representation
or political life. The declaration also confirms that persons with disabilities, including persons with intellectual disability, have the right to be fully included and to participate on an equal basis in the society. 

We can not agree more with this, but unfortunately I believe we still have a long way to go.

Children photo created by freepik - www.freepik.com

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