My Sister’s Keeper
Dear Antlers,
How do I deal with having a sister with an intellectual disability that's hampered by a system that doesn't provide any support for her to progress, and parents who don't want my sister to act like an adult for fear she will get hurt or be taken advantage of?
My sister is in her early thirties but is kept/cared for like she's 10 years old. She definitely shows interest in living a semi-independent life as an artist but my parents just keep her entertained with chaperoned shopping trips, respite carer excursions and volunteering in a charity shop. I fear that when my parents are finally out of her life, she'll "wake-up" and realise the life she's missed out on as an adult such as having a job, family of her own, planning her own holidays, etc. How can I prepare to be a support for her when the time comes?
Sincerely,
A Loving Sibling
Dear Loving Sibling,
I want to start off by saying that I can tell you care deeply for your sister, more than most people do for their siblings to be frank. You are thoughtful, responsible, and empathetic. These are qualities to admire in anyone.
It is also true, however, that many people with these qualities develop them out of necessity, usually to adapt to a fundamentally flawed home environment where they 1) are not allowed to prioritize their own needs/feelings and 2) are parentified at an early age to reduce the stress of their parents. Like many siblings of people with disabilities, you were taught, implicitly or explicitly, that her well-being is a responsibility shared by you and your parents.
It is hard to hold these two facts of life at the same time: you are allowed to prioritise yourself, focus on being a sibling to your sister, and you will eventually occupy a role of support and care in your sister’s life, similar to that of your parents. However, I think these two facts could also serve as guides to answering your questions.
Your parents' guardianship of your sister and your own concern over her independence come from the same place: love, care, and responsibility. As you yourself explain, your parents’ approach towards your sister’s care seems to come from an abundance of caution, perhaps mixed in with the limitations we sometimes put on the world around us. Parental anxiety around not being able to protect their children when they need them is nothing new.
Drawing from my own experience, I understand the particular brand of melancholy brought by thinking of everything a loved one could achieve with the right tools and support. My aunt on my mother’s side is in her sixties and has an intellectual disabiity requiring full time support. The reality of being born in the early sixties with a rare condition meant that the support available geared towards independence was extremely limited. I know my grandparents struggled to find spaces where she would be seen as an individual. They also often gave in to the pressures of protecting their daughter in a world not equipped to embrace her. As her niece, I can’t help but think of the things she might have been able to do and experience had she been born a few decades later.
Since my grandmother’s passing, her day to day care has been taken over by my other aunt; who she now lives with, supported by a part-time carer. With her level of needs, living semi-independently is not a possibility for my aunt but she has a rich life at the school she attends five days a week where she has cultivated close friendships with peers and teachers throughout the years. Our priority as a family is allowing her to cultivate self expression and an individual identity not tied to her dependence on the rest of usHer self-expression and position in the family as an individual first rather than a dependent is a priority. Like the rest of us, she is funny, creative, generous, and strong-willed. She can also be inpatient, particular, and, at times, rude.
Or course, every family and person with an intellectual disability is different. I don’t know the level of care your sister needs and it sounds like she might be well positioned for more independent living. Nevertheless, there are some things I have learned through being my aunt’s niece and observing my mother’s, aunts’, and uncle’s relationship with her.
First, I would urge you to remember that your relationship with your sister is powerful and valuable. As someone of trust in your parents’ eyes, you can work on building pockets of independence for your sister in your own relationship with her. This might look like giving her space to do things on her own when you spend time with her, or supporting her in her artistic endeavors. Perhaps setting goals to achieve together.
This might or might not allow your parents to see everything your sister can achieve on her own and reconfigure the support she receives, but even if it doesn’t, it can be a wonderful opening for her independence to flourish outside of her relationship with them.
I also think it is crucial to remember that the independence you can cultivate within your relationship with your sister relies on your status as peers. Your relationship as siblings is fundamental. From your thoughtful and caring message, I assume you and your sister already have a fairly close relationship. I encourage you to continue to nurture this so you know each other well as friends and sibling first. This will not only give you a better understanding of what she needs when your parents are no longer with you, but also a better understanding of what you can provide. I am sure you both bring additive qualities to each other’s lives.
As cliche as it sounds, those around us get the best version of ourselves when we prioritize our needs first. One of the things I find important about how my mother and her siblings navigate their relationship with their sister is that they have all prioritized their own lives, even whilst knowing that my aunt’s care would someday be their responsibility. In my opinion this allows them to meet as individuals, where one needs more care than the others, yes, but siblings first and foremost. Don’t forget to invest in taking care of yourself. Focus on building your own rich and exciting life and you will have a strong foundation from which to support your sister.
Lastly, it’s important to remember that these questions, as complicated as they are, can always be worked through better when shared. If the dynamics in your family allow it, broach the question of your anxieties around the support provided towards your sister, and have the tough conversation with your parents about the role you will take in the future. Having had my own family move through this process, the conversations you regret are those you don’t have.
Xoxo,
Antlers
