ableism

Living autism

~ Helen White ~ 2 Comments

When the time comes to finally live the autistic life, it can feel both daunting yet potentially liberating but how to go about it. We are forced to question which reality is the real one, the one where we normalise successfully and do all the stuff that looks like having a relatable life (through the eyes of other people) but with terrible outcomes for health, or the one where we are fully cognisant of our autistic traits, meaning that we accommodate them so much better but also meaning that our life inevitably looks much more withdrawn, carefully curated and (yes) autistic by default? In this post I explore questions such as whether and why to seek a formal diagnosis and how to reset social expectations and other boundary issues as I venture boldly into the territory.

Making invisibility more visible as someone with hidden disabilities

~ Helen White ~ Leave a comment

A recent experience I had, as someone living with invisible disabilities, including its positive outcome, just goes to show the importance of speaking up for your needs, of feeding back when things don’t work out and of urging venues and organisers to try harder in the future. Some, if not all, will listen and, in time, things should get better. It will also take a lot more education of the general public for things to really improve, which is something I hope we are all prepared to work towards, as we each do whenever we stand up for our challenges or dare to speak out and educate people regarding what isn’t so immediately obvious about our disability experience, utterly life-encroaching though it may be to us. We have every right to be able to expect to take part in, and enjoy, experiences that able bodied people are able to take for granted and, if it takes a few tweaks and accommodations to make that happen, then we should be pushing for those until we get them. Yes its very hard to do, and we need to pick the right time (for us) to be more vocal as it can take a lot out of us when we are already struggling but we also have to think about contributing, when we can, towards making our invisibility more visible, in all aspects of life until, little by little, people start to see us more clearly.

Internalised ableism meets autistic burnout

~ Helen White ~ Leave a comment

Neurotypical expectations tend to come at all of us from every imaginable angle when we are autistic but, when we also internalise them and bounce them back at ourselves from the inside, the effect can be toxic because there is literally no getting away from that ableist voice now; its there night and day. Until I am prepared to notice that the voice saying these things is not mine and stand up to it, and to anyone else having unrealistic expectations of me given my autistic take on certain situations that bother me more than they can imagine, I risk repeatedly throwing myself back into a burnout status because I will never allow myself to fully recover. Every time anything that looks like a “normal” or so called “reasonable” expectation comes my way, I will simply roll over and surrender to whatever is expected of me, abandoning my desperate need to stop doing these things or putting myself in the way of highly stimulating and demanding situations and exposures in the name of trying not to rock the boat or stand out as different.

Living with syndromes

~ Helen White ~ Leave a comment

Learning to live with any of the syndromes (CFS, POTs, fibro, CSS, EDS, MCAS, to name but a few) can be incredibly tough. From dealing with doubters and denial, discrimination, misunderstanding, thoughtlessness, rejection, loneliness, fear, self-doubt and all the other rigours of long term chronic illness, this post takes a look at it all.

Not broken or special, it’s just how I’m made

~ Helen White ~ Leave a comment

Autism is overdue to add its own part to the diversity conversation, because the kind of portrayals that it currently gets in the media and our society at large are well-and-truly in need of an overhaul. The world is ripe for achieving a whole new level of acceptance of diversity, in all its many forms and those with autism need to take a seat at that table.