By Ayisha Karim (Clinical Pharmacist)
Today is the last day of learning disability week, an awareness raising initiative which runs every year from 15th – 21stJune. It is a week of particular significance to me.
My twin sister lives at home. She has a learning disability and with her being my age, she is finding it difficult living with my parents. We are almost 30 and it perhaps goes without saying that it is natural, at such an age, to want to be independent and want companionship. However my parents, who love us all very much, are scared that she may get into trouble or not know how to handle an independent life, especially if she got married. Given people with learning disabilities are more likely to experience domestic abuse and institutional abuse, it is understandable why my parents are naturally protective.
She has her own wants, needs and rights which should be respected. But how do we strike the balance between supporting her empowerment, and safeguarding?
I can see both sides of the coin. As a mother myself, I understand the need to want to protect my own child from any risk, especially if they are vulnerable. On the flip side, I completely understand my sister's viewpoint; she has every right to live her life in the way she chooses. She has her own wants, needs and rights which should be respected. But how do we strike the balance between supporting her empowerment, and safeguarding?
We have had conversations where I have said to her that she needs to learn to look after herself first, before she thinks about starting a partnership with someone else. I know that, in an ideal world, a true life companion would be with you through thick and thin and support you without compromise. But I also know that, in the real world, not all relationships are supportive and love can be conditional. It is important to be independent first and foremost to keep yourself safe.
She herself understands that she does have certain needs that require additional care and attention in perhaps a way that someone else without a learning disability would not - and that this needs to be discussed with any potential partner. We have had the standard "rishta" processes (a process common in South Asian cultures whereby a potentially suitable partner for marriage is introduced through relatives and acquaintances) where families have come to visit my sister for the prospect of marriage. As a family we are very honest about her. Sadly, it seems clear to me that in South Asian culture, people do not understand or appreciate this open-ness and it is only once they interact with my sister that they understand that she has a learning disability and process what this means. This in turn leads to rejections. This is probably because in South Asian communities, people with learning disabilities are seen as a “burden” even though in reality, all it takes is some extra support (and even then, if necessary, help could be obtained from local authorities if a duty of care can be established). This does upset me because I know it hurts my sister's feelings, and I know how amazing she is.
The only marriage proposals she tends to get are from men abroad in Pakistan, and I hate to be the negative one but I feel that this is probably so someone can get a visa to live in England. I do not want my sister to go through any heart ache or rejection, but I also do want her to make her own decisions and go through her own life experiences (the good and the bad, as it is all part of the life journey). I also know I should not assume people will only be interested in marrying her for citizenship reasons, but I just cannot help myself.
Fortunately, she has a great circle of friends who she plays football with. This certainly helps with her personal development, and this also gives her confidence and reassurance that she will one day meet someone that is right for her. Due to lockdown, she has not been able to see her friends and this has made her feel lonely. I have tried to interact with her via house-party and other apps to do some activities and generally have fun so that she does not feel totally lonely.
There does not appear to be much advice/support available for families of those with learning disabilities, especially from South Asian families.
I want to know how to balance the need to let her make her own decisions and life choices, guide her to become more independent and empowered and also to protect her. This is such a difficult thing to figure out, as there does not appear to be much advice/support available for families of those with learning disabilities, especially from South Asian families. It is important that there is more consideration given to the cultural pressures faced by South Asian women generally and especially those with learning disabilities. This is exacerbated due to gender stereotypes which place expectations on women to be 'carers' who cook and clean and look after their husband. There is also an increased chance of women with learning disabilities having to face financial, emotional and physical abuse.
I am learning everyday how to best support my sister, but I am having to do so myself. More support and understanding is needed of the intersectionality of issues involved for South Asian women with learning disabilities. I know I would certainly welcome any advice and resources that help me help my sister, but most importantly, I would love to see less stigma and more kindness.
If you need support or advice, please contact the MWN Helpline: 0800 999 5786 or firstname.lastname@example.org
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