08 Apr Who’s not in the room? Listening to young people with disabilities
The birth of human rights instruments dedicated to persons with disabilities has been novel in many ways. Perhaps most notable is the active participation of civil society groups in the drafting of key international treaties, such as the UN Convention on the Rights of Persons with Disabilities (CRPD) and subsequent domestic legislation. More than ever, persons with disabilities are participating in the shaping of policy at many levels across the world. While this is a move to be celebrated, we are still not hearing from key subgroups that have so much to say of their experience and their place in society. Today, we look at amplifying the voices of young persons with disabilities, and how crucial societies open ear is to their health, development, and participation.
With mental health awareness on the rise, most of us are in agreement that government policy should reflect every effort to promote even greater societal awareness, and provide services that preserve mental health at every level. Too often, however, the formation of such policy does not take into account the experiences and testimony of young people, especially young persons with disabilities. In response, advocacy group 6th Sense conducted research in Northern Ireland assessing the emotional well-being needs of disabled adolescents. The goal – to make their voices heard!
Encompassing a group of 37 adolescents with a very broad range of disabilities, the report entitled ‘Improving the Well-being of Disabled Young People’ aimed to include young people who would typically be excluded from research projects because of perceived methodological challenges. This might be due to various assumptions about the abilities of children disabilities, often assumed to result in communication difficulties.
Ultimately, the report found that good well-being of young persons with disabilities is almost identical to non-disabled people of the same age. For both, the ability to interact socially and participate in society was a key contributing factor to good well-being, together with positive family relationships and friendships. Similar findings in a 2013 UNICEF report entitled ‘Rights of children and adolescents its disabilities’ show self-determination and autonomy to be at the heart of good psychological well-being. This gives rise to choice, having aspirations, and reaching one’s potential, contributing to feelings of happiness, satisfaction, and contentment. Unsurprisingly, negative experiences had the opposite effect. Well-being was depleted where young people were faced with disrespect, ignorance and bullying.
Where the experience of adolescents with disabilities differs most profoundly from their peers is their lack of choice and autonomy in many situations due a reliance on carers or parents. Taking part in activities and the ability to participate fully with people of a similar age is often limited for adolescents with disabilities due to a lack of suitable transport, a lack of suitable activities, or the overprotectiveness of parents were all shown to be significant issues in the lives of those interviewed. Where the value and importance of accessing activities is so high due to its contribution to development and the formation of friendships in the community, significant stress is placed on parents and carers practically, financially, and emotionally.
International treaties and human rights instruments do not ignore what is required for the psychological well being among children and persons with disabilities. Therefore, it is a matter of reinforcing certain ideas and principles that should inform policy and practice for the better. Rooted in the UNCRPD and the UN Convention on the Rights of the Child, ‘Improving the Well-being of Disabled Young People’ emphasised the importance of developing the following areas:
- “the need to appreciate the higher demands that families/carers with a disabled child face and thus our obligation to protect disabled young people and their families from poverty;
- the importance of formal sources of participation for social interaction, their value for enhancing well-being and how cuts in funding to, or lack of investment in, existing services are counterproductive; the way increased investment in arts and culture would prove value for money in terms of positive social and financial outcomes;
- that bullying and disrespect is encouraged by negative stereotypical attitudes and ignorance and how we have a responsibility to challenge such views;
- how relevant public involvement of young people with particular needs in the design stages of community programmes can overcome barriers to participation.”
Studies such as those mentioned are essential for bridging the gap between making policy and making policy relevant. Only by listening to the voices of those we wish to help can we be effective in improving the well-being of young persons with disabilities. As a society and within our communities, we must make sure that the opportunity and the freedom to live an independent and fulfilling life is available to everyone, while limiting those factors that hinder peoples well-being wherever and whenever we can.