Independence and the challenge of ‘letting go’

9th May 2023

Those of you who regularly read my blog will know that I have had cerebral palsy all of my life and just like the colour of my eyes and my love of dogs it is an intrinsic part of who I am.

I understand that everyone has a different lived experience of disability and each individual’s acceptance of disability is different. I often wonder if this is because of the attitudes our parents had towards our disability.

I was raised in a non-disabled household where my disability was accepted as part as our family. My parents trusted that I knew my limitations and I was encouraged to participate in activities that my non-disabled peers did. I went to Brownies and Girl Guides; I did well at school and I was encouraged to go to University. After university I started to embark on the new challenge and employed PA’s . I was fortunate so was able to engage in most opportunities that came my way. I went on several backpacking trips and skiing holidays in various countries with friends.

Part of the human experience as we grow older is to gradually develop independence and move away from parents and family home. The transition into adulthood requires us to be responsible for ourselves and make decisions that will potentially affect us in later life. This can be challenging for a lot of people and some people will manage it better than others. My parents actively encouraged my independence as part of my natural development.

Julie Kinney has an adult disabled son and wrote in her blog for Exceptional Lives: “For kids with disabilities or special needs, the path to adulthood is often different, and often harder. At age 22 there is a big cut-off, which can feel like a cliff: they age out of special education and switch to adult services. They’re adults, but to us they still seem fragile like children.”

She talks about how for her independence for her son is so important, despite the challenges: “I know we have to let go and let our kids have some independence, even if it means their life, at first, may not be as full and busy as it was as students. But we’re still their parents and we will always do what we can to keep them happy and moving forward as much as they’re able.”

However, I know from the experiences of friends and other disabled people and also from research that this is not always the case for many disabled people. The experience of having a disabled child can make it very challenging for some parents to let go and allow their child to become independent.

Although it’s understandable that these parents want to protect their children and it comes from a place of love and care, research shows that it can be potentially harmful. As Carla Lohar writes in her article for the Huffington Post:

“Shielding a child with disabilities from life experiences is a sensitive subject. It is all too often ignored by many well-meaning parents of children with disabilities. While most of them only want what is best for their children and will go to great lengths to do what they must to protect them, they often do not realize that being over-protective can cause just as many problems as it appears to solve.”

I can understand this especially those parents who have children with learning disabilities who perhaps can’t or find it difficult to advocate themselves. Having to let their child transition into adulthood could be a very worrying time for them because they know their child so well that they will be the best person to advocate for them and know what is best them.

Also there will be some people who don’t want to leave their parents and are happy to stay living at home. This is fine too because what matters is people’s choice and their happiness.

One of the most challenging aspects of my life is employing and managing Personal Assistants, who I rely on to live independently. I’ve written about this in previous blogs and I’m sure I’ll write more! Yet no matter how challenging this can be, it is absolutely worth it in order to live the life I lead.

My independence has been paramount to me and although cerebral palsy has a huge impact on everything I do every day, I feel at ease and comfortable living with it and I don’t allow it to hold me back. I firmly believe that my parents’ encouragement and positive attitude towards me which has been invaluable to my outlook, my values and the way I live my life.

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