My name is Geraldine McCabe. My daughter, Shannon, has Down Syndrome.
Throughout her life, Shannon has been denied the opportunity to fully develop and contribute to society. This is particularly true when it comes to the school system: Shannon’s school has been unable to see past her condition to the vast wealth of skills and qualities that she has to offer. Her school has limited opportunities for her by restricting the manner in which she could participate in the Junior Cert and refusing to let her take part in Transition Year with her peers.
Shannon is only allowed to attend school on a part-time basis; she is only given access to Physical Education for the last five weeks of each school year; and she is never allowed to attend extracurricular activities within the school environment.
A child may have a condition, but they should not be defined by that condition.
Shannon has so much to offer and this must be recognised. Frequently, her condition – which is just one aspect of her – eclipses everything and she does not get the opportunities to study for particular qualifications, or the support she needs to achieve these qualifications.
Unfortunately, factors such as the cost of providing the necessary supports dictate the decisions a school will make when offering education to children with special needs. Children like Shannon can be the casualty of this, when they do not get the opportunities that they need, to get the qualifications that they need, to meet their career goals.
Shannon has had countless barriers placed in front of her. Countless professionals in the education system have written her off and it is an ongoing struggle to offset the damage caused by this.
For children like my daughter, the failure of the education system to uphold her universal right to education and non-discrimination has defined her – instead of being a meaningful member of her community, she is condemned to always being viewed as an outsider, with no currency value.
Vast amounts of money seem to be spent on services, but none of these resources seem to cascade down to the service-users like Shannon. Service-users need career advice. They need to access training. They need to be listened to, and they need to be assisted to believe that they have a lot to offer. This does not happen.
I have tried to address deficits in the delivery of services, as it is very clear to me that the systems do not work. Parents wishing to make a complaint are made to jump through administrative hoops. Staff use jargon, procedure and avoidance of responsibility to stop or slow down the complaints process.
When a parent makes a complaint, he or she is fighting a system, and can be overwhelmed by the sheer size and scale of the system. In many cases, parents are eventually worn down from fighting the system, and make a pragmatic decision to give up.
Schools and training organisations have a pivotal role in ensuring that children are prepared for adult life. This means they must provide children with the opportunities to get qualifications, to develop and expand on the skills and qualities that they need to succeed, and the belief and motivation to make a contribution to society.
We need a re-pointing of schools’ direction and motivation, to place the student at the centre of their priorities. We must overhaul or replace the complaints/advocacy system, and remove the bureaucracy and red tape surrounding support systems.
The financial and emotional cost of advocating for your child is overwhelming for parents, and in this regard, schools ‘could do better’. A lot better.
In April of this year, Geraldine McCabe made a submission to the UN Day of General Discussion on the right to education for persons with disabilities. You can read her submission in full here.
This is one of a series of personal stories of equality and human rights that we are publishing as part of Make Rights Real. Follow us on Facebook or Twitter for updates and news.