My Life Lost?

One thing that still dismays me into silence, even at this vast distance from my youth – I’m now 58 – is how lost my life would have been, if I had attempted to follow the dismally low expectations of those who, seemingly concerned about my big choices, gave me the benefit of their insights and wisdom. Children and youngsters really do try very hard to be obedient. But what would have happened to me if, despite my utter passivity and willingness to please, I hadn’t also been as stubborn as an ox? Perhaps passivity and stubborn-ness are two sides of the same coin…

This dilemma, about what kind of life people with disabilities can look forward to, has many faces. On one hand, in navigating those choices that define our lives, we face a deluge of opinions, ranging from informed and well-meaning insights, all the way along the dusty spectrum of views to downright hostile, ignorant and simply false notions about what we can do. Some people, obviously ignorant or blatantly stupid (“I thought all people with CP were, you know, mentally retarded?!”) are easy to dismiss; others, such as parents who speak in soft voices and suggest a route that leads no-where (“Why would you want to get married?”) are less easy to ignore.

Despite this deluge of advice, so often we tread a line or path alone, all too aware of the risks but blind to the dangers that may be lying in wait. Growing and transitioning is all about learning to decide for ourselves, though perhaps able-bodied adults can take their choices more in their stride. While I stumbled uncertainly around my next steps, others may have offered frowning, careless, or trenchantly expressed opinions; they may have said they were scared for me, or unsure how I would manage – school, university, getting married, having a child – but while I tried to reassure them, I don’t remember these occasions being met with heart-to-hearts, honest conversations or gentle enlightenment. Having no confidence to ask for, or seek out kindness (though I was thrown several very welcome life buoys by my friends) too often, I fell back on wordless stubborn-ness to take me past the thorns of uncertainty, to fix on an option and do my best to follow through.

So much of what I heard, and tried to reconcile myself to, was misinformed, it is little short of miraculous that I am here today. My heart overflows with gratitude to have arrived. Sometimes, my stubbornness has been my best friend.

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