Is Scope a pan disability charity, & if it is, shouldn't this be reflected in this community?
Comments
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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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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.
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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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Hi Rosie, I think this graphic explains perfectly what equality and equity mean but I can't reproduce the image on its own - perhaps it should be visible on the home page.
We've had several discussions about the forum but they seem to fade away after not much agreement..
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(Bearing in mind I have no idea what in particular is being referred to, I speak generally here.)
For what it's worth, I think inclusion is more a journey, an ideal, rather than something that is actually achieved. It is in constant flux, as its definition is frequently changing - especially when new members join. I liken it to a yoga pose, in that the purpose of the yoga pose is trying to achieve the pose - rather than perfecting the pose. So bearing this is mind, yoga can be for everyone. Inclusion is just that - it is meant for everyone.
To me, inclusion does not translate into everyone agreeing and getting along and liking each other. Rather, that can be the whole point of inclusion - that we don't all get along - and accept that imperfect is okay.
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