people with congenital heart defects are expected to be either miserable or inspiration porn.
CHD(s) = congenital heart defect(s)
it's not unique experience for CHDs. lots of, if not all, disabilities are treated like that. are shown, seen, and expected to be either tragedy (tm) or inspiration porn. but it hugely affects people with CHDs and frames our experience a lot.
we're either presumed physically and mentally incapable, fragile, incompetent, expected to struggle constantly, expected to die early, expected to be miserable and pity (in a derogatory way).
or expected to be perfectly healthy after surgery/treatment/confirmation that we wouldn't be given surgery in the near future, expected to be fixed (tm), expected to achieve everything and more because look at these sportsmen/celebrities/other famous people, they made it through and you have to. expected to have no more symptoms, no complications, no after-effects, no problems.
when the reality is that our lives can vary widely. our support needs, problems, abilities, and experiences vary widely.
from the very beginning, there is no single condition called CHD, there are lots of conditions called CHDs (plural!), and their effects, presentation, symptoms, treatment options, and everything else do vary widely. and even the same CHD may present very differently, have different severity, there often are different treatment options (conservative and/or surgical depend on specific CHD) that will have different outcomes. making any assumptions based on *umbrella term*, on *subgroup of diagnoses*, is extremely misguided.
some people with CHDs do have huge limitations in physical activity. some people with CHDs do have neurological/cognitive/mental disabilities. due to comorbidities (CHDs are often comorbid with developmental disabilities and other disabilities), due to effects of surgery (anesthesia may cause brain damage, long recovery with lots of limitations may alter gaining skills and learning things and more), due to low oxygenation that may cause brain damage. some people with CHDs may have other disabilities unrelated (or seemingly unrelated) with their CHDs and have limitations/support needs/struggles because of them.
some people with CHDs can successfully recover with little-to-no after-effects and complications. some CHDs may even disappear on their own! (like patent foramen ovale or small septal defects may close without intervention).
some people with CHDs can and want to achieve lots of things. some people with CHDs can't and/or don't want to.
people with CHDs can have *any* support needs, *any* quality of life, *any* challenges & achievements & difficulties & everything. our experiences vary *widely*.
we shouldn't be presumed incapable and/or incompetent just by our *umbrella diagnosis*. and if we actually *can't* do something and *need* support, we deserve our needs to be met and deserve being treated with respect. we don't deserve to get unwanted pity, unwanted infantilization, all this shit.
we shouldn't be expected to achieve whatever people want us to achieve for being good inspiration (tm). our discomfort shouldn't be ignored. our needs shouldn't be brushed off. our struggles should be taken seriously. and we should be informed about possible struggles, possible symptoms, warning signs, etc!
we are neither tragedy story nor inspiration porn. we are diverse group of people with diverse experiences. and we should be treated as individuals, in every sense.
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