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?
Comments
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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 understand the excitement about finding a dedicated space for neurodiverse experiences, especially as a late-diagnosed individual. That’s important and valid. However, I believe this is where division can start to creep in. Scope has always been about unity, bringing together all disabilities to support one another, and we risk losing that if we create too many separate or closed groups within the forum.
We all have different experiences, whether neurodiverse, physically disabled, or facing other conditions, but we’re all part of the same broader disability community. Nothing About Us Without Us should apply to everyone here. While specific spaces are valuable, we shouldn’t let them cause exclusion or division. Let’s keep this forum a place where everyone’s voices are heard and where closed groups have no place. We’re all in this together.
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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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I don’t agree that the original post was vague. It’s a clear and valid expression of concern about exclusion within the forum. The author highlights that Scope’s principles, which emphasise inclusion and diversity, should apply here. The post raises important questions about whether all disabilities are truly welcome, and why some members may feel isolated from certain conversations.
Exclusion is a serious issue, and it’s essential for the community to discuss it openly. The post makes a thoughtful point, should we feel able to join in discussions regardless of whether we are neurodiverse or not? It’s a call for greater inclusivity, something that should be taken seriously by everyone in the forum.
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A forum meant to support all disabilities should promote open dialogue and mutual respect, not create barriers between different groups.
Silencing this issue through private discussions, as you would suggest, would allow exclusion to persist unchecked, enabling division to grow in silence. By raising the matter publicly, the poster has courageously confronted this problem head-on, demanding accountability and making it unequivocally clear that inclusion and respect for all disabilities are non-negotiable in this community. To ignore this is to allow exclusion to continue, and that is something we cannot afford in a forum that is meant to support and uplift everyone, regardless of disability.
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"It’s also concerning that some members of the neurodiverse community have been actively excluding others from conversations, as if only their voices and experiences matter."
Is there a clear instance of this happening? Or could it be the perception that some are being excluded, where the intent may have been something entirely different? It is possible that the people involved did not intend to exclude others but rather were focusing on their own experiences and voices, which can sometimes come across as exclusive even if that was not the intention.
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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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I would prefer not to be pinged on this thread, as I don't intend to come back to it after this post.
MW123, by vagueness, I mean that an ND person has too many variables already in their head to understand from a general comment what specific issue the OP might have experienced.
I found the thread that I think triggered this, if you read it, you can see that the OP, far from being excluded, was thanked by 2 members. By contrast, one, maybe two ND people have been driven to leave the site because they no longer feel it a safe space in which to share their experiences.
Me personally, I don't care about NT vs ND. I work with both, live with both, have friends of both. It's not as important to me as challenging the structures and assumptions. That can only happen when we are allowed to speak. We don't really have many spaces where we are welcome, much less where people forgive us when we are clumsy, tactless, or rambly in trying to get over our experiences.
Singling out the communication methods and behaviours of a group whose disability is known for poor social awareness/clumsy interaction is like criticising people with mobility problems because they have different ways of moving around. There are other ways to handle problems and tensions between members on threads, which includes discreetly involving moderators, engaging in mediation behind the scenes and making everyone aware, without targeting, that certain remarks are triggering to others.
…I am not against the premise of site inclusion, but making a more general post about inclusivity would have been more positive - as it is, I imagine more ND people will leave the site because of being made to feel generally unwelcome.
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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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I had more to say earlier but had to be brief as I was posting during a work break. Chiarieds, I hope you did not interpret what I posted as dismissing your experience. My intention was to highlight, in my response to MW123, that it is sometimes possible to feel excluded or ‘othered’ without anyone intending to do so. We should all be aware that our interactions can be perceived in this way, as I recognised with my own posts the other day.
Given the number of people leaving or threatening to leave due to comments from others, there are two possibilities: either there are a lot of unpleasant people here, or people are taking offence where none was intended. I choose to believe the latter.
[REMOVED BY MODERATOR - quote of removed messaged from another user]
I do not think this reflects what Chiarieds has said, nor do I feel it is a fair representation of their view. As an outsider I have observed this fallout unfold over several days or even a couple of weeks. To anyone that may not have read all related posts, I can understand how it might appear this way. However, I believe the underlying cause is a genuine sense of hurt and care for the people involved and affected.
It is the comments of neurotypical people being less or worse than neurodivergent that is creating this divide and causing upset, not people calling it out.
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I must emphasise that the issue at hand goes far beyond what could be described as unintentional exclusion.
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Inclusivity must encompass all members, not just one group at the exclusion of others. I urge the Scope team to take immediate, decisive action against this behaviour, irrespective of which group is responsible. The community must remain a space where all voices are heard, valued, and respected.
A truly inclusive environment can only exist when everyone feels valued and welcome, and this issue must be treated with the seriousness it warrants.
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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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Thanks for your follow-up, @MW123.
As mentioned, we have noticed some generalised comments about neurotypical people that were divisive and ultimately addressed and removed by the team.
We have also, and separately, noticed the comments you received, such as the 'stop following me' which were removed and the situation was addressed as soon the team became aware of the comments. However, we're struggling to find an obvious link between those comments and the idea that neurodiverse people are trying to push others out and dominate discussions, or treating people differently because they are believed to be NT. It appears more to us that there is a clash of personalities and it is being conflated with a wider issue of anti-neurotypical rhetoric which has also been addressed.
We are all here because we are connected to disability in some way and I want to reiterate that our aim is for inclusion, not division.
This evening we have removed a number of comments from discussions and will be keeping a close eye out for any continuation or escalation of arguments as we aim to move forward in a more united way, drawing a line under previous divides.
In the spirit of transparency; we want to continue hearing from everyone, but will be leaving this discussion paused overnight so that tensions can ease and the team can be available should any issues arise. It will be reopened as soon as the team start tomorrow morning.
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Thank you for your response and for the actions taken so far. I appreciate your acknowledgment of the specific comments that were removed; however, I still have some concerns and believe there are additional points that deserve further consideration.
While I respect your viewpoint, based on my observations, the isolated comments you referenced seem to reflect a broader pattern of behaviour. This suggests that the issue may not be solely a matter of personality conflict, but rather points to a more systemic concern.
It might be difficult to see an "obvious link" between the comments and the broader concerns I raised, I urge you to consider the impact these behaviours have, rather than just focusing on the perceived intent.
I would appreciate more transparency regarding what concrete steps are being taken to create a more inclusive environment for all, irrespective of neurodiversity status.
Additionally, I feel that the approach taken thus far has been somewhat reactive, addressing incidents as they arise rather than tackling the root causes. While it’s important to respond to individual incidents, I believe a more proactive approach with clear and consistent guidelines would help to significantly reduce the frequency of these issues. If the underlying concerns are properly addressed and effective policies are implemented, it has the potential to minimise challenges moving forward.
Scope, cannot continue to merely address symptoms. A long-term solution requires not only reacting to individual incidents but putting preventative measures in place that ensure fairness and inclusivity for all members. Clear guidelines, consistent enforcement, and ongoing education are essential to creating a positive and respectful community.
I would appreciate further clarity on how the team plans to address the issues raised in a meaningful way, and how all members can collectively work towards fostering a stronger, more inclusive, and enjoyable space for everyone moving forward.
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