Every family has its own dynamic issues with quarrels and struggles that could range from sibling rivalry to more deep-rooted problems. If there is a disabled person in the family then issues of concern are entirely different and more complex in nature. Often when discussing disability in the family, the mother is the person that receives all the analysis, yet in reality the impact of having a disabled individual in the family affects all members in various ways.
It is hard to generalise because each individual is different, but it would be fair to claim that fathers are less expressive than mothers about their worries, anxieties and feelings. Most fathers hide their emotions and rarely discuss what lies in their thoughts, with the firm belief that as the ‘man’ of the family they must find a ‘solution’: a cure for their disabled child. After all it is the ‘man’s duty’ to ‘fix’ things without discussion.
Sadly some fathers blame their wives for bearing a child with disability, as though it is the woman’s sole responsibility simply because she carried the baby for nine months. It is these same men who will feel ashamed of fathering a disabled child and will try to escape people’s gazing eyes and questions as though their pride is being attacked or their manhood is being challenged. This is exacerbated if the disabled child is a first born, the proposed heir who ‘lacks’ the essential qualities of carrying the family name and the ability to provide for it. These thoughts lead some fathers into ultimately rejecting their child and demanding some sort of ‘compensation’ from their wives which is interpreted as bearing another ‘healthy’ child or choosing between him marrying another woman who will give him a non-disabled child or finding a way of basically ‘disposing’ of him/her, asking the doctors if they can ‘end’ the disability.
There are some fathers who feel helpless in the presence of their disabled child. Despite the love they carry for that child, they escape the home environment which ultimately affects the relationship between the father and his children as well as with his wife.
The other type of father tries to somehow compensate their disabled child by actually spoiling him/her, buying everything that the child demands, not refusing any requests from him/her and even showing favouritism in comparison to the other children within the family. This not only damages the child’s relationship with his/her siblings but it harms the actual child too as it will encourage poor behaviour and selfishness.
Brothers and sisters experience a mixed sense of emotions and probably have the most difficult time out of all the family members in adjusting and dealing with having a disabled sibling.
The problem arises when there is a sense of injustice in the way that the brother/sister feels they are being treated in comparison to their disabled sibling. Being too young, they fail to realise that they are not loved less but rather they just require less support as they don’t face the same prejudice and struggles as their disabled brother or sister. Although deep down they recognise that their disabled sibling is deserving of the extra attention, they are children themselves – they too want to go to places that might not cater for people with disability, enjoy school trips with their parents and basically be treated the same. After all, it is not their fault that they were born without a disability.
The other notable dilemma that every sibling goes through is the sense of responsibility they feel towards their disabled brother or sister, even if they are younger and should not have this feeling, but the sense of protection is almost a duty for them. At the same time, it is this sense of protection that can cause rejection of the disabled child by his/her siblings, especially in public or in the presence of friends or school peers. The disabled child will inevitably attract unwelcome gazes which will lead to the sibling starting a fight as the duty of protection takes over. This will result in the isolation of the sibling from his/her friends or peers that generates complex and contradictory feelings within the sibling: feelings of hostility towards the disabled brother/sister at the same time as feelings of love and protection.
This sense of responsibility will grow with the children and the older they get, the more responsible they feel for their disabled sibling; it is almost like an unspoken law that ultimately they will need to care for the disabled brother or sister if the parents are no longer alive. This is a huge pressure for any young person to bear as they will need to plan their future accordingly, which will pose a new set of issues when it comes to work, getting married and accommodation.
She is ultimately the ‘juggler’ – the one that has to keep the family together and attend to their needs, which will not be easy when you have a disabled child. For a while, the mother too will require support, assurance that she did not ‘fail’ by bearing a disabled child, that it is not her fault and she is not to blame for what lies ahead. She will need protection from the extended family and friends who will comment on the child with a superior attitude, suggest methods for a ‘cure’ and some may even hide their own children in case the mother gets envious of how healthy they are in comparison to her own child.
The mother will also bear the maximum criticism for almost any act she makes; if she goes out to work, people will criticise her for not attending to her disabled child, if she goes out to revive herself, she will be at fault for not taking her responsibility seriously. Yet it is essential she gets a break from her children and all the pressure otherwise she may eventually reject her life.
Much has been written about mothers and the sacrifices they make, especially if they have a disabled child. One of the sacrifices could even be their own marriage as in rare cases, their husband abandons them for bearing a disabled child.
In most families, having a disabled child strengthens the family bond and makes everyone closer in some sense, especially among the children. They defend and protect their disabled sibling, care and love him/her like their own child. Any activities that the family will do together will have a sense of uniqueness and difference, and essentially having a disabled child will open the minds and souls of the family. They will be more accepting of others, show greater tolerance to people that are different and basically have compassion and understanding of anyone or anything that is unconventional.
Raya AlJadir is an English degree graduate from Queen Mary, University of London, where she also read a Masters degree in Renaissance Studies and is currently researching for a PhD thesis. She is a freelance translator, writer and proofreader. Her main interest is promoting disability awareness, especially amongst Arabs and Muslims and is the founder of Careless – a disability awareness page. www.accessless.com/