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
Comments
Post a Comment