Silent Cries – Is Anyone Listening? Experiences of Parents & Children Living with Disabilities in African Diaspora Communities.

By Nkeu-ndum  Giddeon N.Angafor [caption id="attachment_52241" align="alignleft" width="1000"] Giddeon & Claris with their two boys, Lesra and Gicles[/caption] I am not sure about you, I do not know your personal thoughts, beliefs, convictions and approach to disability. All I can say, and with certainty too is that most African communities in the diaspora hold varied and diverse views about disability.  Some see disability negatively, noting that it is a subject not to be discussed, especially in public.  For others, disability and disabled persons are generally portrayed stereotypically, seen either as a curse, the result of a sinful act committed by their family or a burden to society. Some, like me, see it as a positive challenge, a unique opportunity to usher in new concepts, convictions and a shift in some of the thought processes about disability and the disabled within our communities. I am acutely aware, based on experience, that some families of African descent in the diaspora who have children living with disabilities experience uncountable daily challenges. That some of the issues which they encounter, and which they find difficult to articulate are the results unconscious and sometimes deliberate actions of the people in their communities.  As a parent, caring for a child with autism and disabilities, some of the views elaborated above, and the actions alluded to can cause overwhelming distress. These cause some families affected by disability to constantly cry out, albeit silently, asking to be heard, seeking to be understood, wanting to be accepted, especially by those they call family, their African diaspora communities. As parents of a child with autism and other disabilities, we have learnt, over the past 13 years, that some of our kin and kindred find it hard to accept, let alone embrace, articulate and celebrate the reality of disability.  Such a lack of understanding and failure to recognise and accept that disability is a fact of life, even by some who have family and friends living with disabilities is a bigger challenge than caring for the person living with a disability. Due to these and other difficulties, some parents of children with additional needs find it hard to go out in public for a number of genuine reasons. This has come to light, over and over in our support network for parents and families of disabled children. Many of them recount examples of when they and their disabled child have been looked at as if they do not have a right to belong. Many parents of disabled children of African descent that we encounter have experiences of when adults, especially those of ‘high status’ within their communities, who they expect to be understanding have pulled their child away from a child with a disability as if they were something contagious. Some of these negative actions and approaches to disability by some members of African communities in the diaspora stem from their families, communities and cultural approaches to disability, which are not only negative, but I dare say outdated. Needless to say that their effects can be quite hurting for those at the receiving. Being parents of African descent in the diaspora, whose child lives with disabilities, my wife and I understand the origin of these views, however, we do not condone them. Unfortunately, this is not true of all the parents in our situation as our interactions indicate that some find it difficult to accept, let alone understand that some can still hold such views. This is true of our Ugandan friend who cannot reconcile the fact that many in his diaspora community work in the medical or care profession, looking after adults and children with disabilities. In spite of that, they fail to accept and accommodate one of theirs in a similar situation. What is more worrying for our friend is the fact that some in his diaspora community make jokes and negative comments about disability in his presence. In doing so, they are failing to recognise the hurt and psychological trauma it brings to his family. Many of us can come to terms with the fact that this is happening, however, we should refuse to give these views our blessing. The key question here is WHY should we say NO to such attitudes? [caption id="attachment_52242" align="alignleft" width="1000"] Claris and Lesra at a Community event[/caption] The first and natural reason why we should shun these views for me is personal, the fact that we are the parents of a handsome young 13-year-old, who is living with autism and other disabilities. A son who did not ask to be born, a life that we made, and one that we have a duty and a responsibility to love, care for, appreciate and celebrate, irrespective of whether they are disabled or not. Secondly, our experience and that of other parents and families of African background, who are in similar situations teach us that our communities’ approach is driven by fear, ignorance and in some cases, a culture which we have failed to hold accountable. (Especially as most of the views and approaches about disability in these cultures have no sound scientific backing).  We are afraid to let go of our deep-rooted, false assumptions and traditional beliefs; that disability is a curse or the result of witchcraft. Believing that if we dare to associate with ‘such’ then we will be contaminated or cursed. We forget that these children are individual and different, that they live a different reality, one which we should seek to understand and appreciate instead of judging and stigmatising them. [caption id="attachment_52243" align="alignleft" width="1000"] Giddeon and Lesra[/caption] As a community, we are not only invited but challenged to share the reality of these parents and their children. A reality which calls us to come out of our comfort zones and dare to journey with them, seeking to understand them, especially their lives and their stories, so that we can better appreciate and communicate what it means to have a disability. If we do this, we can experience how it feels to be the family, friend and community member of a person who lives with disabilities. Doing this will enthuse those from African backgrounds, who see disability as a tragedy for the child and their family to start seeing it as an opportunity to share our common humanity with them. An occasion to challenge views which encourage a culture of ‘us’ and them, creating an impression in some that they do not belong in our circles. When we embrace this new approach our communities will keep fear aside and start seeing disability as an occasion to prove our collective ability. They will engage in build platforms imbued with love, support and understanding for children, parents and families of those living with disabilities. By so doing, our communities will gain a new impetus, one in which we can all stand together and be each other’s keeper, acting positively and morally, in a way that is dignifying to all with additional needs. As I draw to a close, it is fair to note, that everyone, including the rich and famous, has their own challenges. It is also important to ascertain that some of the challenges faced by parents and siblings of children living with disabilities within African communities stem from misconceptions, a lack of understanding and sometimes actions of their peers which are not deliberate. Despite that, our experience of being at the receiving end teaches us that in communities where people accept, embrace, articulate and celebrate disability, the burden is less cumbersome for those in these situations. This explains why it is important that our communities should cultivate cultures which show kindness and consideration to those facing any disability challenges. Recognising that a child with special needs is ‘somebody’, not a ‘nobody’. They are someone’s child, a brother or sister, who is loved, treasured and celebrated, even if just by one person. They are not a ‘retard’, ‘ngombe’, ‘craze thing’ or a ‘troublemaker’ as they are sometimes called in our communities. [caption id="attachment_52244" align="alignleft" width="768"] Giddeon skydiving to raise autism and disability awareness[/caption] It is my fervent wish and hope, that together we can tease out, and find ‘ability’ in disability (this ability). That as individuals and African communities in the diaspora we can blossom together, supporting and enabling our community members with children with disabilities to thrive and fulfil their God-given talents. That together we can deploy and manifest our ‘abilities’ which are that which is life-giving and empowering. Together we can accept, embrace, articulate and even celebrate disability as part of the realities of life, it is not enough to just see it as a taboo. *Nkeu-ndum Giddeon N. & Claris N. Angafor are the founders of CAN-Abilities Foundation, a family run foundation and advocacy charity which creates disability awareness amongst ethnic minorities and other communities in the UK. You can find them at www.canabilities.org or follow them on Facebook to keep abreast with their activities.