Is Scope a pan disability charity, & if it is, shouldn't this be reflected in this community?
Comments
-
Thank you for your continued input, @MW123.
I want to assure you that we are mindful of the impact these situations have on individuals and the wider community, but it’s equally important to understand and fairly address their causes. Personality differences, misunderstandings, or other factors often play a role, and the team works to ensure house rules are applied fairly to all members.
To support this, we remain committed to addressing inappropriate behaviour when it arises, regardless of the members involved. Our goal is to ensure fairness and inclusivity for all members, and if you see any instances where you feel this isn’t or hasn’t been the case, please do make use of the report function to make us aware - as we acknowledge we can and do make mistakes.
We want to make sure that all voices feel heard and valued and will keep monitoring discussions closely, and take a proactive yet balanced approach to moderation. Of course, due to the nature of the community, a lot of our work will continue to be reactive, as no matter how detailed or comprehensive our rules are, people will either not read them, not follow them, or choose to interpret them in a way that suits them. Any divisive rhetoric or assumptions that create an “us vs them” dynamic will be addressed, as this space is for everyone. Scope’s community is for everyone and we’ll continue monitoring closely to ensure it remains a space that celebrates diversity rather than division.
3 -
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
1 -
@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?'
1 -
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.
1 -
I also do not believe that personality clashes are the core issue here. Framing the situation in those terms provides an easy but superficial explanation that fails to address the deeper concerns that require attention.
By dismissing the matter as a clash of personalities, moderators risk overlooking the real challenges affecting the sense of inclusion and respect within the community. Ignoring instances where members engage in character attacks, both against fellow members and public figures, goes beyond a mere failure to address the issue; it perpetuates a toxic atmosphere that undermines the core values of respect and support the community should stand for.
I have never personally used the report button, but I see we are now being encouraged to do so. However, just last week, a long-standing member left the community. Her post, which was visible for all to see at the time but has since been removed, clearly stated that she felt unsupported despite using the report button, as the posts she had reported were either ignored or the necessary follow-up actions were not taken or were inadequate.
Given this, I am left questioning whether reports are being dismissed and wrongly labelled as personality clashes, rather than being taken seriously and addressed appropriately. For the integrity of this community, it is essential that all concerns are handled fairly and transparently, so that all members feel heard, respected, and supported.
0 -
Your post highlights perfectly the point I’m trying to make about division within the forum. While it's important to respect individual needs for space and self-expression, it's equally important to ensure that this doesn't unintentionally create a divide between members. When some voices are prioritised or treated as needing more room, it can easily make others feel excluded or silenced. This approach, though well-intentioned, can inadvertently lead to the sense that certain perspectives are more valued than others.
True inclusion means making sure that all members, whether new or established, whether needing space or not, are able to participate in meaningful conversations without feeling pushed aside or ignored. It’s essential that everyone feels heard, not just those who are asking for space or making certain types of requests. Creating a truly inclusive environment means addressing the needs of everyone in the community, rather than allowing one group’s needs to overshadow the rest.
By focusing on the need for space or adjustment, we risk perpetuating a divide where people feel that their voices or concerns aren’t as important. If we want to move forward as a united community, we have to find a balance between respecting individual needs and ensuring that the forum remains a space where all perspectives can coexist and be valued equally.
0 -
So you don't really understand what I've said.. I can't change that for you!
1 -
It seems there’s still some misunderstanding, so let me clarify. I do understand and respect your views. My concern is that when one group’s needs are emphasised, it can unintentionally create division, especially if others feel excluded or side lined. This is what the thread has been discussing.
I’m not dismissing your perspective, but I believe everyone’s voice should be valued equally to maintain an inclusive environment for all. This is a pan-disability forum, and all members should be treated equally. We all have different needs, and it’s important to balance them to avoid unintentionally dividing the community.
0 -
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.
0 -
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:
3 -
I agree with Rosie that many valid points have been raised here, and we are taking them on board. I’m sorry if it seems some feel I have dismissed their concerns; that has never been my intention. The team has been discussing all the feedback, and we’re committed to using it to inform our approach moving forward.
@WhatThe: Thank you for contributing to the discussion and raising some thoughtful points. I found your comments on the co-production group particularly interesting. This is something we will consider further if we revisit the idea of a co-production group in the New Year.
Discrimination/Exclusion
I have tried to be as transparent as possible in acknowledging these concerns while also explaining that the issue is complex. It is not as straightforward as “Group A is marginalising and excluding Group B.” However, any instances of discrimination, exclusion, or disparaging comments will be addressed.
The team remains committed to fostering a fair and inclusive environment where all voices are welcomed and respected and I have already spoken to how we will do that.
Reports
@MW123: Could you clarify what you mean by “The report function often doesn't allow me to report anything untoward”?
I can’t speak on behalf of the former member who left and shared their experience with the report function, but we have been in direct discussions with them. Together, we have addressed their concerns about both their departure and the issues they raised regarding reporting.
To be clear, reports are never dismissed. The team carefully reviews each one to ensure it is handled appropriately. While the outcome may not always be what the person reporting hoped for, every report is treated with equal consideration and addressed appropriately.
Co-production
Thank you for highlighting the co-production portion of your post, @chiarieds.
Co-production is central and integral across all of Scope. From our ads, campaigns, and across Scope activities and remains central to the work of the community team. While we currently lack the capacity to establish a replacement for the Community Co-production Group (CCPG), we are committed to learning from past mistakes and will not launch such an program or project until we can fully support it.
In the meantime, we continue to incorporate co-production through feedback from discussions like these, our chatbot, feedback forms, and organic contributions from the community. This helps us identify what is working well and where improvements can be made. We are always exploring ways to expand co-production in our work.
Comments about public figures
This is a challenging issue, but I believe I understand the type of comments being referred to.
As @MW123 mentioned, it’s important that no voice is unfairly silenced, and for this to happen we need to respect diverse communication styles and perspectives. We aim to strike a balance between allowing members the freedom to express their opinions and ensuring that all voices are heard.
That said, we will be taking a firmer stance on comments that insult or unfairly target public figures. While such comments won’t always be removed—this depends on context—we will review how we respond to them. And as always, all discussions must remain in line with the community’s house rules.
Thank you to everyone who has contributed to this discussion. We value the feedback and will continue to reflect on it as we move forward.
2 -
Thank you for sharing your experience, it's clear that the initial challenges you faced were significant, and I fully understand the importance of fostering a welcoming environment for new members. Ensuring that nobody feels discouraged from participating is paramount, and I wholeheartedly support measures that enhance inclusivity and confidence for newcomers.
However, I must address a point of contention regarding your previous statement stating, “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.”
While it is entirely valid to feel upset, I strongly disagree with the idea that 'nobody needs to take offence.' Why should someone who is actively participating in a conversation be compelled to leave simply because another participant is upset? I find it surprising that you suggest the person subjected to this should not take offence. Have you considered that the person this request is directed at might actually feel hurt and offended by the situation?
Mutual respect and inclusion are non-negotiable cornerstones of any meaningful dialogue. Any approach that undermines these principles, regardless of its intentions, poses a direct threat to open and equitable discourse.
When discomfort arises, it is the responsibility of the individual feeling upset to manage their emotions and, if necessary, step away from the situation. Everyone has the right to participate in a diverse group, and personal discomfort should be managed without expecting others to adjust or creating an environment that allows upset members to exclude those who may not align with their specific preferences.
0 -
Adrian, I mentioned in my post that I’ve never used the report button, so I can’t confirm whether it’s working or not. I think you are confusing me with another member.
0 -
-
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?
1 -
Inclusion can only be successful when all members feel they are truly part of the Community.
This can only happen through open discussion about differences and understanding and respecting members from all abilities and background.
Does Scope forum encourage alternative perspectives, debate ideas, create an environment which is open to representation of different viewpoints.
Are members treated as individuals encouraged to share their own lives and interests.
If members feel comfortable and supported by the forum they will be more open to sharing their ideas, thoughts and interests.
Do you have different expectations of other members?
Think about interaction between members. Are you approachable?
Members respond better when they feel that others have faith in their abilities and no one is focusing on their inabilities.
It is important that we support differences by being more aware, tolerant and understanding of each other.
These ideas were put forward by Varinder Lekh for inclusive practices in schools but could equally apply to the Scope on line forum.
2 -
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.'
0
Categories
- All Categories
- 14.1K Start here and say hello!
- 6.8K Coffee lounge
- 63 Games den
- 1.6K People power
- 92 Community noticeboard
- 21.8K Talk about life
- 5K Everyday life
- 52 Current affairs
- 2.2K Families and carers
- 819 Education and skills
- 1.8K Work
- 432 Money and bills
- 3.3K Housing and independent living
- 882 Transport and travel
- 651 Relationships
- 60 Sex and intimacy
- 1.3K Mental health and wellbeing
- 2.3K Talk about your impairment
- 845 Rare, invisible, and undiagnosed conditions
- 892 Neurological impairments and pain
- 1.9K Cerebral Palsy Network
- 1.1K Autism and neurodiversity
- 35.4K Talk about your benefits
- 5.6K Employment and Support Allowance (ESA)
- 18.4K PIP, DLA, and AA
- 6.5K Universal Credit (UC)
- 5K Benefits and income