Sooooo…It has been a while since I last added a blog post!! I’m not sure I still remember how?! There has still been plenty I wanted to write about, but juggling work with some recurrent sickness and infections that poor Ori has been dealing with meant my attention has been elsewhere.
If you follow me on Instagram you will be aware that the last big thing I spoke about (also ages ago) on my page was the outcome of the court case that Heidi Crowter was fighting for. If you haven’t seen any of the information around this, you can see my previous blog posts/watch my explanatory video for background. To summarise, the outcome was not the one that the Down Syndrome community hoped for; they refused to rule that the law which allows abortion up until due date for those with DS was discriminatory, despite the law only allowing abortion for ‘typical’ children (or those with disabilities not able to be picked up during pregnancy) up until 24 weeks. It is hard to hear about the outcome of this ruling and not have questions about how society views a person’s worth, and the value of someone’s life. And so that is what has prompted this blog post…
Today I want to discuss how we value people’s lives; our own lives, the lives of those around us, those we see on social media, and those with disabilities. I really want to try and challenge your thinking so you hopefully acknowledge your worth, question what you really think gives a life its meaning, and discuss what ableist thinking we can easily find ourselves falling into so we can learn from this and change it.
(‘Ableism’ is the belief that typical abilities / behaviours / lifestyles etc. are superior to those of a disabled person. It is discrimination and prejudice, and if you are reading this blog it is probably the furthest thing you would want to associate yourself with… and yet you may have done this without realising, I’ll explain later how I certainly did!)
Firstly, before we get into the rest of this blog post… let me start off by saying the following:
Your life is valuable,
You have worth.
Not because of anything you have done.
But because all life is precious, yours included.
So much of what we think about a worthwhile life is of course influenced by our culture, and unfortunately I don’t think this is always healthy. Our current culture seems to reinforce the idea that your worth directly correlates with how much you earn, or your earning potential.
Whilst reading the various arguments of people on both sides of the debate for abolishing the ‘up until birth’ abortions for those with certain disabilities, one thing became abundantly clear - on the whole, people’s judgement of how worthwhile a life is, is very performance based.
Those who seem to have the potential to achieve more = more worthy of life.
Those less likely to have the potential to achieve great things = less worthy of life.
People’s definition varies of what good and worthwhile achievements are, but on the whole we seem to think of career goals and earning potential. We can confuse people’s job with their identity (think about how often when you first meet someone, you ask “what do you do?” as you try and get to know them), and whilst for some people it can be their identity, for a lot of people their job is just something to pay the bills. We are part of quite a materialistic culture, where we believe owning certain items (luxury cars, designer clothes, a large Instagram-ready house) equates to success (social media often only seems to reinforce this), and success and earnings seem to equate to a more worthwhile life. And as such, when we hear about someone with a disability or someone who doesn’t seem to value these cultural priorities, we hear people ask questions like “will they ever be able to have a meaningful job/earn much money/”contribute to society?” (which is almost always meant financially). If the answer is that they won’t, we seem to think their life is worth less. However, if they are disabled and able to work full time and earn a great salary, or compete in high profile sports, or gather a large following on social media, or get a degree / masters etc. we see them as an ‘inspiration’; We have put our performance-based cultural and societal standards based on what a neurotypical, able-bodied adult may value, onto a disabled person… to measure their worth against. This is ableism, and is easily done - even by those with the best of intentions: Even people advocating for those with Down Syndrome and arguing for the validity of their lives in the court case, seem to argue in line with this performance based attitude - e.g 'people with Down Syndrome can now get married / go to university / have a job / drive etc. and so should fall in line with the abortion laws for other babies’. Of course it is important to champion and celebrate the achievements of those with DS, especially as some people still have such a dated idea of what DS means (stemming from times not so long ago, where people with DS were shut away and not included in society, with next to no health care / attempt at an education, or any real quality of life), but there are still people with DS who won’t be able to go on to do any of those things (read this blog post if you have questions on the variations in ability in those with DS). Does this then mean that it wouldn’t have mattered so much if those sorts of people with DS were offered very late abortions? Going forward, what if we develop the ability to test for other diagnoses which may develop later in life, such as schizophrenia or MS? If this affected someone’s ability to get a good job, drive and be independent, get good grades, or earn a good wage, would we see their life as less worth protecting in the womb? Even when we argue for a disabled person’s worth by presenting all the things they can achieve, we need to be careful of falling into ableism - who are we to judge or measure a disabled person against the things that a typical person wants to do with their life?
As the mother of a disabled child, I have had to challenge my thinking on what sort of achievements I want my / our life to centre around. What is a good fit for typical families often isn’t quite the right fit for ours. It is a constant fight not to fall back into prioritising the values of a materialistic culture, but to focus on the values that I want to centre my life around. Some examples for me personally are:
Do I make time for others?
Do I show compassion and care about them?
Do I live generously, sharing my home / food / advice / encouragement / money, etc?
Do I have integrity and live honestly?
Do I do what I can, in the best way I can (regardless of how this may measure up to other people’s achievements)?
These may or may not all be appropriate/possible for Ori as she grows up, and I am sure she will work that out as she goes…but I think they are a better example than putting a certain career or earning bracket on a pedestal as a definition of success.
As a Christian, my whole faith centres on grace and not what we can earn through good works, and yet it is so hard to get out of the mindset of worth being performance based - it is something I have to constantly challenge myself on. Also as a parent to someone with a disability, I struggle not to use ableist thinking to validate my daughter’s life (e.g. “she can do x,y,z / she is healthy/ etc”). But I can wholeheartedly tell you, I do not believe your wage is your worth. Your earning potential has nothing to do with how much you deserve life, or to be loved.
I hope that by exposing some of the ableist thinking of our culture, and giving you food for thought on what you really want to achieve with your life (hopefully outside of your earning/career goals), you will begin to feel free from the cultural expectation of what makes a life worthwhile and pursue something more in line with what you were really created for.
I hope this post helps you recognise our tendency to measure the worth of people with disabilities against what they are ‘able’ to do. Those who are more able, are not worth more love or life than those who aren’t.
If you are struggling with feeling like you are valued or have a worthwhile life, maybe consider measuring it against things like how loved you make others feel / how generous you are with your time or money, or drop me a message.
Let’s honour life and acknowledge each other’s value, regardless of any performance based parameters, let us see every person’s worth.
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