Is Scope a pan disability charity, & if it is, shouldn't this be reflected in this community?

@Emilee - Sorry for the delayed response, as I've had most of my family here today - I took your post as I'm sure you intended, & your later supportive words showed that you appreciated where I was coming from, thank you.

As someone who has thought I've had a fair sense of justice since I was a teenager, am an honest person, & think I always try to look at both sides of things, & feel for people, if I maintained that these are qualities that neurotypicals have, but not those that are neurodiverse, then I think it would rightly hurt & upset a neurodiverse person reading that.

These are qualities that many people have surely? Simply put, some neurodiverse people seem to have previously gone that bit further intimating because of these same qualities they perceive they have as they're neurodiverse, then they are better than neurotypicals.

I haven't taken offence at such comments by some members, but, as I say, they can hurt, & make you feel you can't join in some discussions about neurodiversity. I sometimes just don't comment because of the attitude of some neurodiverse members that neurotypicals are pretty bad people.

I've learnt so much since I joined this forum; I want to keep on learning by interacting with people with any disability. I truly would like to thank all the neurodiverse members who have joined in this discussion; together I hope we can move forward to help all disabled people.

Hi @Andi66 - I have the hypermobile type of Ehlers-Danlos Syndrome, which is so similar to your disorder (if it's not the same). I also have other co-morbidities. Thank you for joining in; you show that we (as members of this forum) have similarities, & also some differences, but I think it's the similarities in our respective struggles that unite us.

Many neurodiverse people have faced enormous struggles; some were late diagnosed. I can appreciate the latter, as I didn't have my diagnosis confirmed until I was 47, after a 2 & a half year wait to see an appropriate geneticist together with my son, & this was many years ago!

Some things are failing us; it taking ages to get a diagnosis when you know you've felt 'different' for a long time, a lack of appropriate awareness from some healthcare professionals, & then, once diagnosed, some find, as did I, well there's nothing further you can be offered.

These, together with other problems, are why we need to work together, & this online community provides that opportunity if we just respect people whoever they are, whatever their disorder & be there for each other as much as we can.

I honestly can't see any 'clash of personalities' here (or on the forum) @Adrian_Scope & don't know where you got that from. Any comment about 'co-production across the whole of Scope?'

Hi @WhatThe - all online community members had the opportunity to apply for the co-production group, but I cannot disagree with you that having everything out in the open may very well be a better solution. Indeed, Adrian seems to be considering this, so it's good you brought this up. It is absolutely an option that can be seen to be fair to everyone.

You also remind me that whilst new members, as we know have to learn how to navigate this forum, then some people may be looking at comments here before joining, & may very well be put off when they see any adverse comment(s), so we should be mindful of that.

I hope I'm finding the right words here, but before some neurodiverse people joined this community, I appreciate that some have felt, as @Albus_Scope says (sorry Albus), that the world is made for neurotypicals & neurodiverse people often feel they don't fit in. However, here in a community with other disabled people, of course you do. That doesn't minimise what you've gone through, but others who aren't neurodiverse have faced our own many & different problems too.

Perhaps Albus could add a caveat, that here in a disabled community, you do fit in. The dynamics surely change in a community of disabled people (and please don't forget what may be a few neurodiverse people that have also shaped the world. I was reading an article the other day that thought Isaac Newton was neurodiverse, Albert Einstein, Nikola Tesla, Leonardo da Vinci, Vincent van Gogh, Picasso, Marie Curie, Alan Turing, then there's Steve Jobs, Richard Branson, etc.)

I'm one of those boring people that reads everything, including a certain brown sauce's label! I also try to be as factual as I can. Wondering if there were any relevant statistics here in the community, I find (I guess the numbers are rounded up) that under the different categories we have:

• Mental Health & Wellbeing…..1k posts
• Cerebral Palsy………………………..2k posts
• Autism & neurodiversity……….1k posts
• Talk about your impairment 1.7k posts (adding together those for Rare, invisible & undiagnosed conditions & Neurological impairments & pain)

So, in this community where helping those with Cerebral Palsy was the core of Scope's origins, then that's the category unsurprisingly that has the most posts, with Mental health & neurodiversity being apparently equal. The rest of us, with disorders from cancer to rheumatoid arthritis, from a visual/hearing impairment to genetic disorders, are neatly 'funneled' into the last category of having an impairment not otherwise mentioned!

Here, in this community for all disabled people, neurodiverse people actually have a far greater voice; some members are neurodiverse & have other disorders, &, perhaps, some of us could feel under represented as those not neurodiverse rather having a multitude of other disorders. We do need to be all heard absolutely equally, which I hope we'll achieve working together, so surely it shouldn't matter what disorder/disability any of us have?

Thank you @Bluebell21 - I'm sure this concept about inclusion is what the Scope team already strive for; we should celebrate diversity, but without any division, which was what I was trying to convey.

I think it's enormously important that Scope, unlike charities such as The National Autistic Society, Fibromyalgia Action UK, the ME (Myalgic Encaphalopathy) Association, Versus Arthritis, Mind, etc. is for all disabled people & their families.

One of my concerns sometimes is that when we signpost members to other charities for their own particular disorder, is that we should also encourage them to remain part of this bigger community. I honestly think that together we can perhaps have a real impact in fighting the issues that disabled people face, tho all such charities are important in their own right.

For some people there may be very few active members in some organisations (e.g. rare genetic disorders), & I feel that the support & understanding here may sometimes better help.

What needs to be seen is that all members are treated equally; we are all disadvantaged in only having text in which to communicate; we have visually impaired members, those with learning difficulties, those with a physical impairment that makes texting difficult, those for whom English isn't even their first language, so all of this has to be taken into account.

If we've remained here (& it's important that new members/those thinking about joining see this too), then whilst celebrating our differences, we shouldn't treat anyone 'differently.' 'United we stand, divided we fall.'