Is Scope a pan disability charity, & if it is, shouldn't this be reflected in this community?
I thought Scope was a charity that welcomed people whatever their disability; I thought it was for everyone.
From Scope's main page it says, the principles for colleagues to follow in everything they do at Scope are:
- Made for all or none at all
- No assumptions, just inclusion
- Nothing about us without us
- Diversity not division
I'd like to draw attention especially to the last bulleted point, & query does that not matter on this forum?
I've seen some people seeming to separate themselves out. We're all obviously diverse with our different disabilities here on this forum, & many members support each other. However, surely we should not be divided?
Unfortunately this seems to be happening. Should I only comment about my own disorders (Ehlers-Danlos Syndrome & Chiari 1 Malformation)? Or, should I feel able to join in with discussions about those who've had a stroke, suffer chronic pain, etc., but certainly not about posts concerning being neurodiverse? Anything about being neurodiverse seems to be where I'm most unwelcome; I feel excluded.
Isn't this community about all disabled people? About neurodiversity, it can be a comorbidity of many disorders, including Ehlers-Danlos Syndrome:
If anyone wants more links to medical papers about this, please say, & I'll happily provide them.
We're diverse, but why do some neurodiverse people want to not include neurotypicals? Some of us have also faced adversity in our lives, & are here to support everyone not being bothered, in the nicest possible way, if someone's neurodiverse or not….
On a disability forum, it's disheartening to see some wishing to distance themselves; why are you here if you feel like that? I thought Scope was for everyone….it should be, & all of our members should hopefully feel the same. We shouldn't let anything divide us; we're all disabled people in this together, aren't we?
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a very insightful post i look forward to reading the replies fair play to yourself for bringing up
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Thank you @michael57 - I do hope some of our members (& the Scope team) respond.
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I imagine most forum members read/comment on what interests them.
Nothing about us without us.
Finding an autistic community on the Scope forum is sooooooo exciting for me as a very late-diagnosed woman!
Scope should be proud to host liberal discussion on all our conditions 💜 as I posted on another thread, there is nowhere else like it for the autistic community! 💜
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I do think this would have been better taken to the mods directly to discuss with them, as they are better placed to objectively step in and maybe guide or explain to people what the problem is.
Exclusion happens all over the forum. We've seen a few big incidents of this, and people leaving because they felt unwelcome - these conversations were not in the ND space. It also happens within the ND space towards ND people. I won't list specifics as I don't want to call people out, but I have seen ableist language twice in the last week and a few inaccurate comments and people telling ND people to go to another site as this 'isn't really' for autism and such.
I don't know what prompted the OP's post but it would have been more helpful to be more general about exclusion and inclusion overall.One other thing - ND people can be tactless. If an ND person causes offence, then they won't know about it unless they're challenged at the time. Making a vague post like this citing nonspecific incidents isn't going to help anything. Ironically, it adds to the division by drawing lines. If you can't challenge the incident at the time it happens, then speaking to moderation is the best method of resolution.
Posting a thread like this ultimately reinforces the negative divisions the OP wants to offset.
Communication is a cooperative experience and it involves adjustments and allowances and compromises from both parties in order to work.3 -
I just click on new discussions so I haven't noticed anything you mention. I join in or I don't.
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people telling ND people to go to another site as this 'isn't really' for autism
AR, I also saw that remark and one polite objection to it.
Not sure if there's a problem now with me highlighting something on a post? It's exhausting to try and counter every misunderstanding when there are so many but good communication is at the heart of any relationship.
Communication just happens to be one of our key differences so I don't expect us all to get along. We don't in real life. This is a platform where we could increase our understanding of all manner of conditions if we wanted to. My interest is in other autistic people and their experiences because they help me understand my own. Autistic people know all about exclusion but we are certainly not responsible for it here or anywhere else!
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Emilee, yes, thank you.
When I think of all the **** I've had to tolerate, ignore, overcome, it's baffling for autistic people to be painted as a malign force in the 'disabled community'.
When any Scope member leaves the site in distress, it's right that we try to address why in discussions like this.
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It's not even as simple as ND v NT!
My main objection when I was finally able to log on this week was to comments from ND Albus. He didn't come back to me with a page of resentment because I dared to challenge what he said...
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Good morning @chiarieds
Thank you for sharing this. I know how much the community matters to you and I can certainly appreciate how disheartening it can be when a space that is meant to feel welcome and inclusive doesn't feel that way to everyone.
You’re absolutely right: Scope's online community is, and should be, for everyone—no matter whether they have a physical impairment or an invisible impairment, whether they’re neurodiverse, neurotypical, or connected to disability in some other way. It’s a community that’s meant to celebrate diversity and unity, not division. It’s so sad to hear that it’s feeling divided for you and maybe others too. That’s not how anyone should feel here.
I think a lot of disabled people, including neurodiverse folks, have faced experiences of being “othered”—made to feel different or even excluded—in wider society. When they find others who 'get it', it can feel like a safe place to come together. But I totally agree, this shouldn’t be to the exclusion of anyone else. It’s a balancing act, and I think sometimes it can unintentionally feel like a line is being drawn where none should exist and where some aren't even aware there is one.Your voice, and the voice of everyone here, is important. You should absolutely feel able to join in any discussion that interests you—whether that’s about neurodiversity, fibromyalgia, cerebral palsy, visual impairments, chronic pain, or anything else. All experiences are valid, and all perspective matters. As you pointed out, so many disabilities are interconnected, and even when they’re not, empathy and shared understanding can bridge those gaps.
I guess my question is; what do you, and others, feel the Scope team could do? When we notice this sort of divisive rhetoric we try to mediate and explain how damaging it can be. We do not wish for there to be a feeling of “us and them,” on the community, because the community is for all of us, no matter our differences. And the truth is, it’s those differences that make us stronger together.
Thank you again for speaking up - you’ve reminded us all of the kind of space we want this to be.
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Thank you @Adrian_Scope - & everyone for your thoughts & contributions.
I think the Scope team need to be more decisive on occasion. Just being told to read the 'House rules,' & I wonder if some members even do this, isn't always enough. The reasons for the Scope team stepping in are not always perhaps made as clear as they should be.
As a forum that has 'House rules,' then all members need to abide by them; it doesn't matter if you're neurotypical, neurodiverse, suffer from physical or mental health conditions, no excuse should be made, tho always continue to show your understanding. A moderator's words should be final.
I feel losing the CCPG, especially after all the effort Jimm & ordinary members tried to put into it, hasn't helped. Members lost the ability to discuss matters that concerned them about the community with the Scope team (some things we didn't even get the opportunity to discuss with yourselves). Now I wonder if the following was written when we had an active CCPG, or is it just about the various other Scope teams working together/with yourselves? I'm aware this may include Scope members. Online community members help by looking at different content for the community, recently the new platform, etc. but this is only very occasionally.
It's all worth reading, particularly:
''Scope has committed to:
- champion co-production across the whole of Scope…..''
I believe this community is part of Scope.
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Note from the online community team:We have paused this discussion temporarily to give the Scope team the opportunity to catch up, and hope to review and reopen it as soon as possible.
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BE the change you want the world to be 💜
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I have joint hypermobility syndrome, which causes a number of heath problems for me. With the pain, joints digestive problems, easy bruising , slow healing, fatigue, also got copd and autism
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@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?'
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I feel losing the CCPG, especially after all the effort Jimm & ordinary members tried to put into it, hasn't helped. Members lost the ability to discuss matters that concerned them about the community with the Scope team (some things we didn't even get the opportunity to discuss with yourselves).
It strikes me that the forum is probably more equitable without that facility. It means everything is out in the open ie a public discourse. How is that not more fair for the rest of us here?
Remember that new members can't edit their comments like established members can. The report function often doesn't allow me to report anything untoward. Comments get caught in the spam filter leading to potential confusion in threads. Besides that, I simply don't have the time, energy or motivation to read every post. The assumption that we all do is unrealistic.
Good communication is about making ourselves understood. Well, ASD by definition means we have long been misunderstood and felt unacceptable in an NT world. New members need to be allowed time and room to get used to being on a public forum (perhaps just using the internet) while they learn to express themselves, some of us for the first time in our lives!!!
Somebody saying 'don't follow me' is asking for space and expressing their feelings in that moment. Nobody needs to take offence. It's not a crime to be upset.
My time on the Scope forum has enabled me to be much more tolerant of others and ignore what I don't like. It's great that we are addressing all of this but change doesn't happen overnight. We process information at different rates and lean towards personalities we can relate to - that's human nature.
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So you don't really understand what I've said.. I can't change that for you!
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But we're not all equal when we join the forum as I tried to explain. New members do need that space to feel comfortable, welcomed and included. I have related my first experience of posting - the first response was from somebody asking why I had asked my question so I withdrew until I felt confident enough to return. I have also explained how I could barely compose a sentence back then.
We make allowances for children starting at a new school and for new colleagues at work. That's all I'm asking for here.
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There's been lots of valid points and discussion so far and we are taking it all on board. I believe Adrian will be responding more fully later but @WhatThe's most recent post reminded me of this graphic which I thought would be good to share:
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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?
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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.'
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