The Prophet Muhammad, may Allah’s peace and blessings be upon him, said: “Heaven lies under the feet of your mother.” (Ahmad). This shows that motherhood in Islam is a sacred role but as a disabled person, the concept of motherhood is complicated – it is not a straightforward option. In this series, I will be looking at the different perspectives of motherhood and disability. This month, I will look from the perspective of the disabled child.
The guilt factor
Being a disabled daughter, I can say the mother-child relationship can be complex, mainly due to the feelings of guilt and dependency. I have read many articles, reports and blogs over the years of the difficulties that mothers with disabled children endure. Although the situations presented have led mothers to have some feelings of satisfaction, the struggles seem to overshadow many of the positive things that I have read. Clearly such readings only serve to increase a feeling that already exists within many disabled people, including myself, of guilt and dependency. For years, and maybe until this day, I carry the guilt of being a heavy burden on my mother – a woman who never left my side, accompanied me to every hospital appointment, cared for me 24/7, stayed by my bedside when I was ill. There are images in my head that will always haunt me, of her sleeping on a hospital chair next to me, or when she was ill but pulled herself out of bed to care for me, or even just how she must have coped with people’s negative attitudes towards me – yet she never allowed me to know about it. I am sure I am not the only person living with disability who has these feelings of guilt, that feel beyond our control.
We see our mothers getting older and weaker and automatically find ourselves to blame for their back pain or weak legs. There is no escape from my guilt as her care for me is continuous – even when she had her own operations, she would demand to be returned home as soon as possible because she does not trust anyone to care for me the way she does. I too only feel completely safe with her; I trust her opinion more than doctors or other medical staff. In fact, there have been so many occasions when the doctor had prescribed or asked me to try something which mum advised me against, and I usually followed her opinions because she knows me better than anyone else.
This feeling of guilt is exacerbated by the media and society; we are constantly exposed to the idea that a mother who gives up her disabled child is selfish and cruel, and the ones that don’t are some kind of martyrs for doing an honourable act that not many can cope with. Both images are wrong. I would not judge anyone as I dislike being judged, but not every mother who gives up her disabled child is selfish; maybe it is out of love that she sacrifices her chance of motherhood to ensure her child receives the best care. Details don’t seem to be important for people that jump to judging others purely by taking the face value of someone’s actions. Again, not every mother who chooses to keep her child should be praised.
Would we hail mothers of able-bodied children for keeping them? Why the discrimination? Plus, just as the mother is giving her all to her child, she also gains many things from her disabled child.
I personally began to see the ‘mutual’ benefits in recent years and that is when the guilt got less. I doubt it will ever vanish, but I started to realise that my mother needs me just as I need her. After my father’s death and both siblings moved away, I was the only one left at home. I became my mother’s constant companion – I am not just a daughter but a friend too. Often she confides in me about things that my sister and brother know nothing about. Ultimately, I give my mother a sense of purpose and being continuously needed, which many people require after retirement age. She is never alone or at loss with what to do. As I have got older, I have learnt how to deal with this guilt by trying my best to do as much as possible for my mother; I help her with the shopping by hanging all the bags on my wheelchair, I answer the phone at home and generally deal with anything she needs help with. I make sure I accompany her to every doctor or hospital appointment she has. All these acts have helped me to understand that yes, my mother has sacrificed a lot for me, but she has also gained from having me as a daughter, and that the guilt I have carried for years has no real foundation.
We are born to live the life that Allah (SWT) has written for us so why should we spend it feeling guilty? We must embrace our destiny, being content and at peace with our inner and outer self. Yes, I am a disabled daughter, yes I require more care and help than my siblings but it is Allah’s will, and I should accept it. Allah (SWT) is merciful so surely feeling guilty of my presence, regarding myself as a burden on my mother, is a form of rejection of my destiny. In actual fact, my situation is a blessing that I may not always see clearly, but one day, insha Allah, it will be more visible.
Guilt is a negative energy that will only succeed in making you resent your situation, or worse, prevent you from accepting the way things are. I don’t want to satisfy my guilt, but celebrate motherhood in all its forms with one main thought prevailing – I am super lucky to have a mother, but she is also lucky to have me.
Read Part 2 HERE – A Disabled Mother, So What?
Raya AlJadir concludes her two part series on disability and motherhood, this month looking from the perspective of a disabled mother.
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. Facebook: www.facebook.com/Accessless