Shame: The Sidekick of Disabled Parents.

Shame hits different when you're a parent with a disability, but how much of it is ours to carry?

Disclaimer: In this post I use the term Disability/ Disabled to cover physical illness, neurodiversity and mental illness. I'm aware not all individuals who are neurodivergent or have a health condition consider it a disability. I base this depiction on my personal health journey and own identity as a disabled parent.

My Not So Secret Shame.

Interrupting your weekly glimmer stack with a bit more of a melancholy post, but I promise I will return to trying to find the best bits soon.

My life has been a series of health issues and breakdowns not just recently, but forever. Almost all of these periods of ill health can be attributed, in my case, to my brain. It’s neurodivergent processing and sensitivity are the foundation of both my successes and my failures, in sickness and in health. Even the physical health issues I live with, can be traced back to it's function (or dysfunction) Migraine or functional seizure anyone?

I read something recently about depression. It was a passage in a novel—a psychological thriller to be precise—but the truth rang through the fictional narrative, chiming in my ears as loud as church bells.

The passage (which I won't quote due to copyright) noted the depressed character's shame and how that shame impacted his family. The passage stated it was his shame not his depression which caused him to act out of anger and dismiss the help of the people who loved him. His shame was to blame for the inertia and the propensity to and propel his anxiety into full-blown panic. I've read similar before, lines about how guilt is a common and explainable emotion and the suggestion that shame is something we project.

I understand this won't be everybody's experience. Just as I know those who aren't parents will still experience shame. However, speaking only from my own experience, the words hit a nerve.

I spend a lot of time in bed because of my ill-health. Both the physical and the psychological/neurological symptoms I experience impact my ability to participate in family life.

When I'm not in bed I spend my time feeling deeply ashamed for time spent under a duvet. I can read as many positive affirmations about rest as I like, I can see posts stating ADHD is a superpower, and those uber annoying ones that say disabled just means differently abled, and still, I won't feel better about it, not as someone with ADHD and not as a parent.

Politically, the UK has a Prime Minister actively standing up to say: disabled people must work. Sure, he dresses it up as accessible and caring, like he's offering the poor disabled people a free ride to career success (which of course he is not) but if it were those things he was proselytising, the outcome would solely focus on disabled people and wouldn't conclude with saving the UK government billions of Great British Pounds that could be recouped from millionaires instead of society’s most vulnerable.

The thing about disabled parents in particular is, we fall into a loophole that is hugely unsupported by either welfare or workforce. Some might argue this incorrect, given that both disabled people and parents have some protected rights in the workforce, but I can assure you, from lived experience, those rights only extend to a few extra days sick leave, usually unpaid, and you’re very likely to still get your P45 at the end of them. They don't protect us from our illness and they don't provide help caring for our children. Low income families can claim monetary support to help with childcare costs, but you don't automatically get help if you can't work because of your disability.

Parenting Isn't the Problem

I had a recent debate with someone on another platform regarding my “choice” to have children and I replied with a satirical response. Read here.

I said it above and I'll say it again now: Parenting isn't the problem, societal expectation coupled with inaccessibility for disabled people, is!

Without the judgement of others we would naturally feel guilt and remorse when applicable situations arise, but shame, deep-rooted, beet-red, emotional purgatory, wouldn't exist as it does.

I wouldn't feel like a terrible mother, a failure, for needing help on the days I can't get out of bed. Yes, I would still miss spending time with my children when I'm too sick to do so, but with the right support, without the weight of judgement, I would be better equipped to enjoy the good days —instead of using them as a metaphorical stick to beat myself with. I believe this as fact. I believe it in my soul.

I also believe, without the divides of left and right politics and the social class system turning (always) on those less fortunate, without corporations putting in-person value on productivity and schools dragging worn out and incapacitated parents through the hall of shame as they single out our kids in class for not doing their homework, shame would be less of a problem.

Parenting has never been the problem. Our children or our ability to love them, is and has never been, the problem. Expectation is the problem.

As a sick person if I were to put a number on it, I'd say I have 20% productivity on a good day. Maybe 2.4 workable hours in a 12 hour period. And in those 2.4 hours I'm supposed to have a job, manage my health, (which requires medicines and rest between every task) maintain social relationships and a happy marriage, and parent two children.

The math ain't mathing because it's physically impossible.

If you also account for flare ups of any one of my five diagnosed health conditions, each with more than 200 symptoms, not to mention the average illness, such as a common cold or stomach flu (usually picked up from my children) I would be in a deficit of, I’m guessing, around 300 years!

I'll say it again: parenting isn’t the problem. Being a mum isn't the problem. Being unwell isn't even really the problem, though of course it would help if perfect health was attainable, but being able to live well (or not as the case may be) is the biggest cause of the shame I carry, and subsequently project outwards.

When I wake up in the morning feeling shrouded in an invisible cloak printed with the words “I'm too ill to function and therefore useless” that's a problem. Not just for me, but for my family. If being disabled is considered a burden to society, how will my children ever feel safe to let someone know if they're not okay? How will I instill the notion that disability isn't a life-sentence while I feel shackled by my own ill-being?

The Path out of the Shame Hole isn't Linear

I've learned there is no straight line to not feeling shame. I feel I can say this from experience having walked every line imaginable in my many attempts to get there. In some twisted way I wonder if I'm actually buoyed by the shame itself. It's a reminder of how much I care about the things I'm unable to do. A reminder of how much better I want to be. But I also think, having wrapped myself in it's shawl, that I've become stuck. I read similar things online everyday from other parents living with a disability, so I know I'm not alone when I say shame is a disabled parent’s sidekick. Having to miss your child’s school play or martial arts grading because your body is saying no, or your brain says absolutely not today would make any loving parent feel upset, perhaps even guilty, but would we feel as guilty if we had sickness and diarrheoah, or the flu? I don't think I would.

Short-term illness is considered inevitable, inescapable even, and yet I don't have the luxury of being able to escape the symptoms I live with everyday either. Perhaps, because my reasons for missing out are often due to similar causes, the same migraine, syncope, overwhelm, anxiety, and varying degrees of pain, it somehow feels like I can hear the excuse in my own voice. Forgetting though, that it is actually never an ‘excuse’ only an explanation. The weight of other people's expectations, whether real or imagined in my head, that's what causes shame.

My husband says to me that I worry so much about other people (friends, him, the kids, doctors) thinking that I'm not trying hard enough to get better, that I start to believe that theory myself. But that's all it is, a theory that I've internalised and then projected, because deep down, I know in my heart, categorically, that this isn't based on fact. Quite the opposite actually… I know my internal fight to get well is constant and unyielding.

I think the first thing to admit about shame is this: while it's cause maybe as a result of other people's expectations, it's ability to modify and fester, to grow muscle strong enough to suffocate us, is only possible because we nurture it.

Anyone at any given time can become disabled. Just one accident, injury or infection away from a lifelong health condition. This is true for every human, not just parents. Allowing our disability to shame us has an impact on those around us, the very people we’re trying to protect from the way we feel about ourselves.

I think it's amazing that people are able to succeed and achieve their goals in spite of incredible challenges, disability included, but I also think it's totally okay if you don't achieve anything.

Your worthiness of love and happiness isn't measured by whether or not you played in the Olympic games, or worked a 40 hour week when you were sick. It's measured by, or should be measured by, our kindness and integrity.

What I'm trying to surmise here, is that it's normal to feel sad, bad even, when we can't do something but the first step to removing the shame like in any recovery journey, is admitting it exists.

I haven't met a parent yet who doesn’t feel guilty but shame and guilt aren't synonymous. Shame is the byproduct of someone else's projected views. Society pours the gasoline and we set ourselves on fire.