Disabled person - it’s meaning too generalised today

theme79 · December 16

Why the charity name change to Scope was both positive but a Trojan horse.

Disability is talked about constantly, but severe and to a lesser extent any physical disability has increasingly been crowded out in practice.

Access systems are overwhelmed, not because needs are wrong, but because very different forms of disability have been conflated into a single undifferentiated category.

People with profound physical impairment — wheelchair users, people with respiratory dependence, neuromuscular and other such conditions — have non-negotiable, time-critical, bodily needs.

These needs are now routinely placed alongside very different experiences of disability which, while I stress are very real and deserving of recognition and support, but do not involve the same absolute physical as well as social inclusion and health constraints.

The result is not inclusion, but loss of prioritisation.

When everything is treated as equivalent, those with the most constrained bodies lose first.but ultimately everyone looses out.

We are increasingly invited to surrender our physical disability identity, or to lend it to a broad, generalised category of impairment and “disadvantage” that flattens difference and empties meaning.

Many physically disabled people do not want to deny, attack, or compete with other groups. We want to support them as allies — not be asked to disappear into sameness.

Solidarity does not require erasure.
Recognition does not require equivalence.
Justice requires distinction as well as compassion.

Littlefatfriend · December 16

Language is only words but they can mean very different things to different people theme79. As I understand it, the name change resulted from Scope's decision to broaden its focus away from cerebral palsy. It's also the case that the second word of the former name was commonly used as a vulgar or rude term for people with all types of disabilities.

I, for example, don't consider myself "physically disabled". I have profound physical disabilities but my abilities and opportunities are what's got me through that.

I don't feel crowded out here, I encourage inclusion. It's all potentially interesting to ponder on, our differences. More specialised communities also exist, I'm a member of a few. They tend to be focussed on certain activities or subjects (cars, sports, gardening, etc) and how they relate to and can be done by people with disabilities similar to mine. Peer guidance can be useful. Those organisations make their priorities clear.

In my experience some access systems are being overwhelmed, but that's a consequence of many years of underfunding. That's what it boils down to.

Many people have all sorts of disabilities which have more or less profound effects on them. Having taught people with many sorts of disabilities, I think Scope does a good job of being welcoming and at the same time quite focused. It's often clear in questions and comments that people here know and recognise each other, but I don't find that sense of community excluding despite not being party to it much.

When "everything" isn't treated as equivalent, some will inevitably get forgotten and the loudest voices will be all that's heard. Mental illness can certainly be as challenging as physical disabilities, just sometimes in slightly different ways. If we aren't interested in discussions on any topic, we don't need to read them.

My identity isn't a product of my disability. Both things likely influence each other but the fact that I use a wheelchair is irrelevant to my identity. They're just how I get around.

Everyone is disadvantaged to some extent when compared to other people. That's unavoidable, we all have different experiences/opportunities etc. I certainly don't consider myself particularly disadvantaged, I know lots of people have lives much harder than mine. In that sense we are all also advantaged to some degree, depending on whom we're comparing ourselves to. We can't know what it's like to be them.

As with most words, Justice means all manner of different things to different people. I'm not aware of a better world than this one!
😇

theme79 · December 16

https://forum.scope.org.uk/discussion/comment/1091175#Comment_1091175

Thanks for taking the time to engage — I agree with much of what you say about language, plurality, and the reality of underfunding.

Where I think we differ is that I’m not making an identity or inclusion argument, but a structural one.

My point isn’t that other disabilities aren’t real or deserving of support — they clearly are. It’s that when materially different needs are treated as administratively equivalent under conditions of scarcity, prioritisation disappears.

For people with profound physical impairment — wheelchair users, those with respiratory dependence or neuromuscular conditions — access needs are non-negotiable and time-critical. When systems flatten difference, those bodies tend to lose out first, regardless of intent.

Self-definition matters, but so does social perception. Whether or not I centre disability in my identity, the world relates to me as a disabled body, and access decisions are made on that basis.

I’m not arguing against inclusion or solidarity. I’m arguing that solidarity doesn’t require sameness, and justice sometimes requires distinction as well as compassion.

Amaya_Ringo · December 16

Just coming into this with an invisibly disabled perspective. I understand what you want to say, about the diverse range of disability needs. I'd like to just chip in with a few misconceptions, however.

While physically disabled people are often excluded because of their disability, and sometimes, because of how they present - invisibly disabled people are excluded because of how we DON'T present - most of the barriers come from the assumption we don't struggle with things, including social inclusion, or health restraints - or that being (imagined able) to do things (because of apparent physical ability) somehow makes the burden of disability less.

I am physically able to walk anywhere. But my inability to navigate means that doing so on my own can put my life in danger. And has done, on several occasions - like the days when I can't judge direction of traffic when trying to cross a road.

Of course, this experience isn't identical to the experience of someone with the disabilities you describe, nor am I undermining those experiences. But that does not make it more, or less. Disability is a significant barrier or challenge to someone's everyday life; whether it is visible or not is academic.

On the subject of health, the current average life expectancy for a person with autism - is approximately fifteen years less than an equivalent non autistic person. (In the case of an autistic person with a coocurring LD, it can be even lower). One of the reasons is poor mental health - which is evidence of a lack of social inclusion, acceptance, understanding and so on. Another reason is also the coocurring conditions (epilepsy, for example, is a factor for some autistic people).

But the least mentioned cause is the higher rate of poor outcomes for autistic people in heart conditions and cancer compared to their neurotypical equivalents. This is probably because autistic people struggle to access medical care, to be treated properly by medical practititoners, to explain their symptoms, to even feel they can access help at all. This is a pretty dire statistic, but it feeds into that idea that invisibly disabled people experience barriers most because of how they don't present.

There's also intersectionality in play here. I'm neurodivergent but ablebodied. There are neurotypical people who have a physical disability. And there are neurodivergent people with coocurring physical disabilities. How each person deals with the world and their challenges depends on a multitude of variables - not just one or two criteria.

If it works, the below is a link to a study on invisible disability and how it is perceived/people's experiences. It's from this year, so relatively recent.

Attitudes towards invisible disabilities: Evidence from behavioral tendencies - ScienceDirect

What we're seeing right now in the media and at govt level is a concerted attack on neurodivergence and mental health in particular. These articles are repeating the myths that not seeing a disability makes it less severe or impactful on daily life. I realise that's not what you mean to say, but the end result of what you are suggesting is the same.

To summarise, I feel that being an ally means accepting disability is a very broad category, and that we all belong equally within it, not in factions of priority or with assumptions about need.

theme79 · December 17

https://forum.scope.org.uk/discussion/comment/1091219#Comment_1091219

Thank you for such a thoughtful and careful response. I want to be clear from the outset that I do not deny — and would never minimise — the seriousness of autism, invisible disability, or the very real exclusion, risk and reduced life expectancy many autistic people face. Those realities are well evidenced and deeply troubling.

I also want to add some context, not as rebuttal but as explanation. I am the parent of a neurodivergent, trans daughter with autism and ADHD, and I’ve been closely involved — personally and professionally — with neurodivergence, mental health and disability since the 1980s. I’ve lived and worked across a wide spectrum of disability experience for decades. So this isn’t unfamiliar ground for me.

That long, longitudinal view is actually what informs my concern.

Where I think we may be speaking slightly past one another is the level at which the issue is being discussed. I’m not making an argument about whose disability is more real, more valid, or more deserving of support. Nor am I suggesting that invisible disability is less severe or less life-limiting. I fully accept that it can be profoundly so.

What I’m trying to name is a practical and operational problem, not a moral or political one.

In everyday systems of access — transport, physical space, healthcare triage, emergency response, queueing, time-critical assistance — some disabilities involve non-negotiable bodily constraints that cannot be deferred, masked, or compensated for in the moment. When systems under pressure treat very different needs as functionally equivalent at the point of delivery, prioritisation collapses. When that happens, people with the least physical margin tend to lose out first — not because others’ needs are less important, but because the form of constraint is different.

I completely agree that at a political and ethical level, we belong together. We share a common interest in resisting stigma, improving funding, challenging exclusion, and opposing hostile narratives about disability, mental health and neurodivergence. Solidarity there is essential.

But solidarity does not require pretending that day-to-day lived experience, access needs, or risk profiles are the same. In fact, I would argue that genuine allyship depends on being able to hold difference without collapsing it.

One small but telling example of this flattening is the shift from Disability Living Allowance to Personal Independence Payment. Dropping the word “disability” didn’t resolve the underlying tensions around dependence and need — it smoothed them over with language. That kind of abstraction sounds benign, but over time it produces systems that talk inclusively while functioning poorly for many.

Self-definition matters, but so does social perception. Whether or not any of us centre disability in our identity, the world still responds to bodies, behaviours and constraints in very concrete ways — and access decisions are made on that basis.

I’m not arguing for factions, hierarchies of worth, or competition for compassion. I’m arguing for distinction without denial — recognition without erasure. When everything is treated as equivalent at the operational level, the outcome is not justice but design failure.

If we can hold both truths — shared political struggle and different practical realities — we stand a much better chance of building systems that genuinely work for everyone, rather than rhetorically including all while practically failing many.

Amaya_Ringo · December 18

Unfortunately, society does not and will never look at disability as anything but a hierarchy. Non disabled rhetoric is already focusing on supporting 'real' disabled people, and I, and people like me, are not 'real' disabled people in their mindset.

On that note, neurodivergence is not separate from disability. It is disability. Not seeing it as such is part of the battle we're currently facing. Words, unfortunately, matter (as someone else mentioned above).

So while you are right about certain explicit physical access issues, I don't think you are right about the whole situation (even if your intentions are).

For wider context, and since you mentioned transport, it's always been my rule on trains that, if I am in a disability seat, and a wheelchair user, or someone with a stick, or a guide dog, gets on, I will move. Nobody has to ask me, I will just go. So to me, giving priority to the immediate, explicit need is second nature. I have blocked passengers from pushing past visually impaired people disembarking, have helped blind people (on their request!) to operate lifts, and I will always step aside to make space for a wheelchair user, whether at work (where I work with disabled people quite a lot) or otherwise. This is because, as a disabled person, I recognise that other people have challenges and try to think around them as I encounter them, rather than pretending not to see.

On the flipside of that coin, I've come close to full blown meltdowns on trains due to overcrowding. Nobody moves to make room for me. I've been told to change seats because someone wants the space for their bag. I've been verbally abused by a dog owner who finds the space convenient for her annoying monsters. I have had to sit on the floor, been lectured on my disability by rail staff (who have never met me before), been made to move for a bike, been humiliated in front of an entire rail carriage, and been told that my disability doesn't count, as only wheelchairs matter. And those are in the situations when I'm able to articulate. Sometimes I can't.

Autistic people are left to manage those situations. A meltdown is not a voluntary or non urgent situation, nor is it a non-physical one, even if you internalise it. Masking it is not compensating. It's eviscerating your nervous system from the inside out. We must not mistake 'masking' as a coping strategy, when it's been shown to be a factor in destroying people's mental health. Whenever I internalise a meltdown, I am usually unwell for a week, maybe two weeks following. But nobody sees that. Nobody asks, nobody supports, and I can't articulate. So I just have to deal with it. Like so many autistic people, I'm assumed to be 'fine' or 'coping' because what we live is not on show.

If someone is physically unable to walk after a stressful disabling experience, it would be visibly obvious that that person was in need of support. But if an autistic person is unable to leave the house, to communicate, to function in normal ways (ie, able to eat, able to take care of themselves) because of the aftermath of something unseen…then how do you make people understand that, much less recognise its severity?

One of the biggest struggles for autistic people is having other people tell our narrative and decide what is and isn't a barrier, a disability, a real concern, or needing of support. I've worked with people with MD, and with CP, and I would never say I understand those disabilities, only the little bits and pieces I could do to help support my students with their independence. You can only understand a disability for real if you have lived with it.

I'm sorry that we'll have to agree to disagree on this, but I feel like the problems you are citing for physically disabled people in accessing certain services, facilities or support can be just as time critical for invisibly disabled people, including autistic people - only that need is often dismissed. They're not always the same exact barriers, but they are real and physical.

I think the real example of this inequality is how often autistic people have to use physical disability metaphors to make their struggles understood. If society were in a place to view disability in the holistic way you are suggesting, we might have a different conversation - but it isn't, and probably, will not be for some time to come.

All the best to you and your daughter this holiday season :)

chiarieds · 1:42AM

I wrote a lengthy reply, saved it as a draft, then deleted it due to @theme79 's later reply.

I had read Amaya's link with great interest, & welcome this study being replicated; it's how we learn more. We are all different, & hope we can embrace that whether we're disabled or not.

It seems that some of us have worked with people that have disabilies in a professional capacity; I did, as a now long-retired physio. Does that colour my judgement, perhaps? Well it taught/showed me that people can have the same disorder, yet be affected so very differently.

Shoud I believe in the medical perepective of triage; I believe I should; we are then all equal as to the help we need. I'm so sorry if this has not been the case for you @theme79 - a medical emergency should be treated as such, especially if your medical history supports this.

No, of course everyone's needs are different. I doubt anyone here would disagree. I think we sort of agree with you on that part, so what 'distinction' do you want? Why is that so important to you?

theme79 · 11:13AM

I want to start by acknowledging the care, honesty and lived experience people have brought into this discussion. I’ve read the responses closely, and I don’t doubt for a moment the reality, severity or cumulative harm of invisible disability, nor the exhaustion that comes from having needs repeatedly questioned or dismissed. I wish there were more space in forums like this to sit with complexity rather than being pushed toward either/or positions — because this is one of those areas where simple answers don’t do justice to lived reality.

One thing I want to add, because the Parliamentary POSTnote has been mentioned: it’s important to be clear what it is and what it isn’t. POSTnotes are political briefing papers, not original research. They synthesise selected literature and stakeholder views to inform policymakers, and by necessity they generalise, infer, and sometimes avoid sharper distinctions that would carry budgetary or political implications. That doesn’t make them useless — but it does mean they shouldn’t be treated as settling conceptual questions and crucially not peer reviewed research.

The problem I’m pointing to isn’t about whose disability is “real”, nor about separating communities. It’s about how conceptual flattening at the policy level enables avoidance of costed action.

When all disability is treated as a single, undifferentiated category, governments can:

fund low-cost initiatives around awareness, language, training and inclusion,
while deferring or underfunding high-cost structural requirements like accessible housing, transport, staffing, space, time, and personal support.

That harms everyone. Invisibly disabled people are left with rhetoric but little practical relief when systems are overstretched, and people with high-dependency physical or energy-limited conditions are left without the material access they require to survive day to day.

At delivery level — trains, clinics, housing, emergency care — staff are then asked to apply abstract equality language without adequate resources or frameworks for responding to non-negotiable constraints. That’s when people end up being dismissed, humiliated, or forced to justify themselves to one another instead of being supported by the system.

I completely agree that invisible disabilities can be urgent, physical, and life-limiting, and that masking is not coping. I also agree that society already imposes a damaging hierarchy. But refusing to name different kinds of constraint at an operational level doesn’t defeat that hierarchy — it just pushes it into systems, where it re-emerges as scarcity, denial and conflict.

For me, allyship isn’t about pretending all needs are identical in form. It’s about recognising difference without erasure, so that policy can no longer hide behind inclusive language while avoiding the real costs of access and care.

I wish there were more opportunity to explore this kind of distinction thoughtfully and without defensiveness, because I think many of us are ultimately pointing at the same failure — just from different places within it.

Disabled person - it’s meaning too generalised today

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