Our family (myself included) is one of the ‘lucky’ ones to win the genetic lottery that results in comorbid diagnoses of EDS, PoTS, MCAS and ASD. God forbid, one of them is also LGBT and uses a walking stick, as does their partner, who they met through a support group.
To be honest, I am not entirely sure how to take this thread. Many of the early posts were awful, frankly ableist and fed right into the current narrative that is being fuelled by the media against disabled people. Surely any sensible person can see this is being done to ensure the general public are sufficiently outraged, so that they will support drastic reductions and removal of disability benefits. (FWIW, no-one in my family claims benefits, but I have friends who need to and do.)
On the other hand, I have been concerned for years by the seemingly increasing numbers of young people that are illness/disability influencers and seem to live and breathe their disability as their identity and purpose, as that is not our lived experience. Yes, disability is part of who we are and therefore part, but not all, of our identities. We battle every single day just get on with things, get through the day and manage things that other people don’t even have to think about. I will admit to worrying that the exponential increase of this on social media may affect how people like myself and my dc are perceived.
Dd uses a walking stick. She has EDS and PoTS, plus multiple other delightful issues and while she can walk without a stick, she needs it for balance and if she is going to be walking for more than a short period of time. She was bed-bound for a long time, missed most of her secondary school education and in her early twenties is just beginning to get back on track, starting uni next academic year (albeit online, as she is still mostly housebound). Post uni she has chosen a career path she can do whilst working from home. She has to take multiple medications just so she can get out of bed and/or stand long enough to do anything. She is under a lot of specialists (all NHS btw in case we get accused of diagnosis shopping) sees a specialist physiotherapist regularly and has to do daily exercises to try and keep her joints stable and maintain sufficient muscle mass for venous return. Despite a good diet, she is dangerously thin and cannot maintain a healthy weight. She suffers from constant pain, daily dislocations and overwhelming exhaustion. Other than her weight, none of the things she struggles with can be seen or could be guessed.
I suspect, some of the early commenters on the thread would judge her and her partner if they saw them on one of their, very rare, outings. Especially as she is ‘alternative’ in style and as her partner is a part-time wheelchair user and has a walking stick for when they are not using their chair. Neither use a typical NHS type stick, why should they? They are young and if they’re going to have to use one regularly, they would rather it was one they like the look of and suits their style. When dd’s joints are at her worst she has to use specialist crutches that will take her weight without dislocating her shoulders and elbows, again these are not typical NHS crutches and are actually rather snazzy looking, which I suspect may also cause some people to make assumptions about them and her. On the rare occasions they go out together, I suppose some commenters on this thread would just automatically assume they are faking or making a lifestyle choice?
She would find this thread extremely distressing. Using her stick (or her crutches) helps give her confidence that, on the occasions she does go out, she has suitable support and won’t be given grief for needing a seat or to use the disabled toilets. Using these mobility aids has also meant that she is occasionally able to go for short walks locally on her own. She has lost so much and fought so hard over the last decade. Imho, regardless of the motive behind these threads and of the fact that yet-again, MNHQ failed to see and deal with ableism in the same was as it does other nastiness on the boards, the fact is they do cause harm, by adding to the current media feeding-frenzy suggesting all disabled people are lazy wastrels that want life handed to them on a plate, squeezing money out of the system in every way possible as they go.
Yet dd is one of the kindest, most supportive, non-judgemental people I know. I am honestly in awe of her. So many people that have been through what she has would be bitter and angry. I am not even close, as I am regularly frustrated and angry on her behalf and sometimes my own, although I am not as badly affected and was at least able to enjoy a decent number of years of having a relatively normal life before my body gave up.
I am not sure what the answer is. Social media and online support groups are a lifeline for those with disabilities who are housebound or have very limited capability to actively attend activities outside of their home, but disability being ‘promoted’ as a lifestyle choice is obviously never a good thing. Personally, I think it’s fairly easy to tell the difference, but then again, there are always going to be more colourful characters, who maybe are LGBT and/or favour an alternative style of clothing and hair and they should be allowed to express themselves however they damn well like, not just sit at home in shades of grey and brown in order for people to accept that they are genuinely struggling.
Like so many things, sadly, it comes down to the genuine people being inappropriately judged, based on the activity of the few with the boldest profiles or loudest voices.