Cynnwys
- Main points
- Background to the research
- Barriers to access and engagement
- Improvising and adapting to navigate barriers
- The cost of inaccessible activities, goods and services
- The impact of coronavirus (COVID-19) on access and engagement
- Towards solutions
- Disabled people’s experiences with activities, goods and services data
- Glossary
- Measuring the data
- Related links
1. Main points
A summary of this report is also available in an Easy Read version.
A brief video of the main findings is also available.
- Disabled people faced many different barriers, including: physical access, restrictive building layouts, inaccessible online services, poor information provision and inflexible design of customer services that do not consider accessibility for a broad range of needs.
- The experiences of online services was mixed among disabled people; for some experiencing digital exclusion, access and engagement was limited, and for others, online services facilitated access and helped mitigate some of the physical design barriers within day-to-day life.
- Extensive preparation and developing workarounds were some of the ways in which disabled people navigated interacting with difficult-to-access services, with some having to rely on family and friends for support.
- Extra effort in developing workarounds came at a physical, financial and emotional cost to disabled people.
- Disabled people with invisible impairments could face a conflict between needing support but not wanting to have to identify themselves as disabled to access it, because of perceived external judgement and negative stereotypes regarding disability; this contributed to a sense of vulnerability which people felt negatively impacted their wellbeing.
- The impact of coronavirus (COVID-19) caused negative experiences of isolation with limited access to support for some disabled people, which extended beyond coronavirus; however, others acknowledged the positive increase in online services, providing more opportunities to access, connect and communicate.
- Disabled people identified their priorities for future service provision, including: physical and online environments being appropriate for a wide range of impairments and offering flexibility in recognising and accommodating needs, involving disabled people in policy and service decisions that impact their lives, increasing awareness and empathy for people with a range of impairments, and providing meaningful, readily-available help for disabled people when accessing activities, goods and services.
In this report, “disabled people” and “participants” refers to people with different impairments, aged 18 years and over, who took part in this research. We aim to portray the views of participants and to reflect their words as closely as possible. Some quotes have been edited for language and grammar to improve accessibility, without changing the content or meaning.
2. Background to the research
In October 2021, research and recommendations from the Inclusive Data Taskforce (IDTF) highlighted the importance of ensuring that disabled people's lived experiences are fully reflected in UK data and evidence. Disabled people may face greater risk of exclusion and greater difficulties engaging with some research because of the way it is conducted. Data therefore may not adequately capture and reflect the range of issues faced by disabled people. The IDTF recommendations also emphasised the value of undertaking more qualitative research to enable a more comprehensive understanding of the needs of disabled people, including the existing barriers to access and engagement and how they may be overcome.
As part of early scoping work, we worked closely with the Disability Unit in the Cabinet Office, and spoke to a range of academics, government departments, and disability charities. An evidence gap was identified around disabled people's experiences of accessing private sector activities, goods and services. The scarcity of data on barriers to private sector activities, goods and services means there is limited evidence for understanding how to improve and regulate such provisions.
Taking forward IDTF recommendations, this qualitative research specifically focuses on identifying the barriers faced by disabled people and the solutions they suggest for making access easier.
In this research, "activities, goods and services" are considered to cover a range of private sector provisions such as shopping, banking, restaurants, entertainment and leisure, and sports and exercise facilities. For a full definition, please see Section 9: Glossary.
Recurring themes which shape disabled people's experiences in accessing and engaging with activities, goods and services include:
- different barriers which influence accessibility through the physical design of the built environment, digital design of online services, and the design of systems and processes
- strategies that disabled people often employ to improvise and adapt to navigate access and engagement barriers
- the cost of inaccessibility to activities, goods and services, and of strategies to achieve access
- the impact of coronavirus (COVID-19) on disabled people's access and engagement with activities, goods and services
- suggested solutions from participants for improving the inclusiveness of activities, goods and services in the future
3. Barriers to access and engagement
Disabled people identified a wide range of barriers in accessing and engaging with activities, goods and services. The nature of the barriers varied, and individuals were affected in a range of different ways. Across those interviewed, reported barriers they experienced related to three key areas, which were:
the physical design of the built environment
the digital design of online services
the design of systems and processes
Physical design
Physical design of spaces could undermine disabled people's access in different ways. Physical design includes both access to buildings, and accessibility of facilities and layouts once inside. Barriers in relation to physical design were particularly reported by those who are neurodiverse, or with impairments affecting mobility and stamina, breathing or fatigue.
There's a particular restaurant just up the road from me, and [a friend] keeps saying to me, 'You have to come with me there.' There's a step up into it, I can't go. I can't, I just physically can't, she doesn't understand this and she keeps saying to me, you know, 'You have to come,' and no matter how many times I say to her, 'I just can't get in the door.'... [she said there are] people in wheelchairs in there, I said, 'But they must have somebody with them to help them in,' I said, 'In a powered wheelchair, nobody can lift it'.
Examples disabled people gave of inaccessible design features included buildings that only have stair access, restrictive layouts such as narrow aisles and walkways that are hard to navigate.
I've found the aisles are never wide enough for manual or electric [wheelchairs], even crutches. It's almost impossible to navigate a clothing shop without taking out a rail of clothing. I've lost count of the amount of times I've nearly pulled an entire rail over.
This made shopping, going to restaurants and using other services difficult and created multiple restrictions for navigating daily activities. For some, inaccessible physical design also created unwanted social interactions and embarrassment.
I have to plan in advance, 'Do I need to go to the toilet right now, or can I wait until the end of the meal?' Because trying to get there and back in between, and then you're disrupting other people sitting having their meal....They wouldn't have to accommodate the entire restaurant, but if they just had one walkway that was wide enough for a wheelchair, you'd get to the bathroom and back without having to constantly say, 'Excuse me. Excuse me'.
Although some larger supermarkets were praised for being more physically accessible than some smaller shops, neurodiverse participants noted that big shops could be a flashpoint for overstimulation. They described how overwhelming the shopping experience can be, especially without the opportunity to take a break.
When I would go out into shops, I also find them challenging... I will get a sensory overload. The only way I can describe it is my brain turns to mush. My speech becomes really slurred and very, very slow. My body literally becomes almost paralysed. I'm very, very sore and stiff and almost just totally freeze.
Disabled people could experience overstimulation in services other than shopping, particularly in busy environments of cafes and restaurants, hairdressers, theatres or cinemas, and leisure and exercise facilities like gyms and pools. For some, this undermined access and engagement opportunities.
I always found it stressful as a kid going to swimming pools because of the acoustics of the pool and the noise reflecting off the ceiling, kids shouting, and if I go into a sports centre where people are playing squash or something and the ball is banging against the wall or the ceiling or something, while I can initially cope with the noise, sometimes, after a while, it starts becoming a bit stressful and I feel a bit agitated.
A hairdressing salon, noisy, noisy, noisy. A lot going on, too busy...There are blow dryers going, there's music on, there's chatter. There's a lot to process.
One participant also noted that changes to supermarket layouts could cause confusion, and were a barrier to access.
If you go into a supermarket and you're used to things being in the same place all the time and then suddenly they move them, that completely throws me.
Toilets were mentioned by many disabled people, with the lack of available or sufficient toilets for customer use particularly affecting those with bladder or bowel issues.
The availability of toilets can be an issue, there may not be enough of them and where they are located may not always be ideal.
I said, 'Where's the toilet?' 'Upstairs.' 'Where's the disabled toilet?' 'Upstairs.' 'Have you got a lift?' 'Yes, it's broken.' 'Well, I need to go to the toilet.' 'Well, you'll have to go elsewhere, mate'.
Alongside the lack of available accessible toilets, disabled people described barriers to accessing toilets, including those seemingly set aside for use by disabled people. Staff members were often perceived as gatekeepers regulating access to locked toilets, which undermined independence and created an unwanted sense of being treated differently.
The various places we went, you have to go and get somebody to open the disabled toilet for you, where that should be an automatic thing. It should just be like going into any normal toilet. You shouldn't need to go and get a separate key to open the toilet if you've got a disability. It doesn't feel nice really and it's like you're different
Although disabled people thought that there were often simple measures that could be put in place to remove these barriers, they felt that disabled people were either not being listened to or that organisations are unaware of the ways in which they are restricting access to their services.
That's where frustration sets in, because I'm being denied access without them even realising that's what they're doing. There was no consideration on you've just lost a customer. There was no, 'We're really sorry.' Nothing. It was just like, 'No, [you] can't get in. See you later.'
Digital design
With service provision increasingly shifting from physical to online environments, particularly after the effects of coronavirus (COVID-19), participants discussed barriers around digital design and accessibility. Digital services could be both beneficial and problematic to disabled people depending on their needs, their access to digital services and their ability to use them.
Digital exclusion was noted as undermining some disabled people's ability to engage with a range of online services, including essentials such as utilities and banking. This could have particular implications for inclusion given that disabled people are disproportionately digitally excluded, with 15% of disabled adults never having used the internet in 2020, as detailed in our Internet users, UK: 2020 bulletin. Participants emphasised how important it is for those who lack digital infrastructure or skills to still be able to access services and receive support.
I think obviously, the world's becoming more digital day by day but I think the pace at which things are moving makes it's very difficult for people who aren't tech-savvy to keep up, let alone if you've got a disability which affects your interaction with technology... I don't want to sound that defeated, but it's really difficult when you're not getting the support.
Online services could present considerable cognitive demands. The multiplicity of passwords required was reported to be a major barrier, especially where people were not familiar with using technology. This appeared particularly challenging for participants with memory and learning, understanding or concentration impairments.
There was an occasion about a year ago, I think, where I forgot my password. I then had to answer a number of questions, and was timed out if I took too long. I found that very difficult, because my lack of ability to type means that I'm very slow in responding. It took me quite a while to answer the questions.
Participants also highlighted the importance of website accessibility, providing examples of where websites had and had not met their needs. Some participants with learning, understanding or concentration impairments also highlighted a priority for accessible and digestible information such as easy read and video formats.
I've realised the easy read pictures are really useful ... I'm reading those pictures and they help make them more accessible for me... I can read a book and I can absorb complex information but I miss all the bits, whereas the pictures are just really, 'Ah, that's really simple,' and often I'll put the two together.
Others described difficulties with functional aspects of websites such as a lack of screen-reader accessibility, or colour blind settings.
I find it very confusing and devastating sometimes because let's say the formatting is terrible, it's not optimised for mobiles, there's no option for screen readers, things aren't properly explained or everything is hidden in really weird awkward places. Like the user interface and user experience is not optimised at all. Things like that make it very hard for me as a consumer to actually purchase things.
Participants with mobility impairments talked about their online shopping being delivered to places that are difficult to access, such as at the bottom of the stairs. This was an issue with online communication where special delivery instructions were not followed.
It's sometimes a bit of a negotiation between the delivery drivers to get them to bring it all the way up the stairs. I do usually write, in the note, you know, 'I have a disability, I would like you to bring the shopping to the top of the stairs.' But, I have had times where they've left it outside and gone, which is infuriating.
More positively, online shopping was said to enable access to groceries from the comfort of home for some participants, creating a sense of choice and control over the shopping experience. This appeared particularly important for those who experienced physical barriers accessing shops or who avoided overstimulating environments.
Online shopping is my favourite thing ever. If there's an online store where I don't have to carry anything, I don't have to touch anything, I'm able to take a break at any point, literally leave it for four days if I need to come back...Another great thing is anxiety about going through the checkout, there's no such thing there. I can see what's in my basket, I can see the exact total it comes to, I can remove anything at any time.
Some felt that the development of more online systems, such as ordering to a table in a bar or restaurant, made access and engagement easier for disabled people and created a sense of choice and control over the experience.
I do think it's the death of hospitality but I do like when I go to places and there's a QR code that I can just scan it, order it from my phone and they just bring the food straight to the table, no hassles, no issues.
For those who could access it, online banking offered benefits, particularly around the ease of balance checking.
Banking, I can sometimes lose money when I send it to the wrong account but luckily, I like doing it online because you can see an audit trail of things, which makes things easier.
However, closure of local bank branches was seen as a barrier to those experiencing digital exclusion or those facing difficulties accessing online banking because of their impairments. Additionally, many valued the access to in-person flexible support in branches, which appeared to facilitate engagement with banking. Some participants described experiences of having to travel further to access their nearest branch, which could undermine access.
When I do go into [bank], the staff are quite accommodating and know me relatively well. Although, actually one of the main banks I bank with, their branch has closed so now... I have to take two buses to get to the next most local branch which is very frustrating. And those staff aren't all the same as the staff that I was quite familiar with, which is frustrating but it is what it is. As everything becomes more digital, I guess, I don't really have a say in the matter.
Design of systems and processes
Many of the online and in-person access barriers that disabled people faced related to inflexible systems and processes, which did not meet the needs of individual disabled people. This applied across the range of activities, goods and services, with many barriers linked to a perceived lack of customer support.
Where is the proactiveness of the retailer to say, 'Oh would it be helpful if we did this? Do you have a need or requirement, you know what I mean, for some extra care or whatever?' There's none of that.
Systems with complex and multi-layered processes, such as those required to access a bank account or organise a return of goods, could be difficult to navigate and appeared overly demanding and stressful for some.
These processes that retailers have, these policies that they have their staff follow to frustrate the returns process, obviously trying to protect their revenue, can really, really, really, really cause a lot of grief if you have mental health conditions.
Customer services, particularly online or telephone, were perceived as impenetrable by some participants, who described finding it very difficult to speak to customer service representatives to explain specific needs.
I find because there's a whole load of legal jargon, contracts to sign, a lot of the time they're not optimised for asking someone to read it out, it is such a hassle. I'm really not a fan, I don't like to deal with it. If I'm having a problem with a provider I'd rather sit there with the problem forever more than actually get it dealt with just because I know that the accessibility for it is just not there.
Participants also gave examples of organisations being inflexible with their communication preferences and needs, which could undermine access and engagement, for example for those with hearing or memory impairments.
I said multiple times 'I prefer to communicate by email', I said so many times in email, 'I can't phone you'. I copy and paste this at the beginning and end of every email. And they ignored it every time. At first, I said 'I find it preferable' but eventually I have to explain why I need written communication to make them listen to me, so I tell them 'I have memory loss and hearing issues'.
However, some service providers, including utilities, banks, delivery services and private transport providers, were identified by participants as offering customers opportunities to flag additional needs, which appeared positive.
I've got the thing in place where I'm classed as a high-risk customer, so if the electricity goes off because obviously, I have an oxygen machine... that physically makes up the concentrates [of] oxygen for me. If the power goes off I'm top of the list and need it sorted.
Participants also highlighted airports as having provided a positive experience to customers through their special assistance approach. This enabled access to airplane travel for those who may otherwise have been unable to do so, though requiring the availability of support staff for delivery.
[Airports] have special assistance programmes in place. They do provide wheelchairs and push people through the airport and help get them through security at the airport and get them to the plane or from the plane. That works quite well in airports and whether that situation could be replicated in other places in society or not would be interesting.
5. The cost of inaccessible activities, goods and services
Workarounds and strategies to navigate access and engagement barriers could be costly financially, emotionally, or in the time and effort involved.
Financial costs
Participants discussed the impact of additional financial costs incurred by disabled people to be able to access and engage with activities, goods and services.
I just felt like if there's anybody that should be paying more it's not someone who has a disability who's already probably paying for a lot, medication, whatever, that's the person that needs some relief, but that's the person who ends up paying more because they have certain needs.
Participants spoke about needing specialist equipment that is more expensive than similar equipment designed for non-disabled people, as well as facing extra costs for insurance.
So the upfront payment that had to be paid for a car suitable for the wheelchair I have, was £2,799 ... I now know that at the three-year point, I've got to find another £3,000 if I want to have another car that will use the wheelchair. I don't have that. I know I'm not going to have it and I know that come three years' time, I'm going to be back in a wheelchair that's manual and completely dependent on people again.
I booked a ticket to go to America and most insurance companies just flat out wouldn't insure me and [among] the ones that did the insurance, [it] was something like £700 or £800 for a ten day trip... And I'd sit there thinking 'what?'. It's literally 'yes we can discriminate if you've got an illness you're either not going or you're going to pay through the nose'. That's actually one of the biggest things for me is that actually.
Participants also spoke about facing additional hidden costs and having limited choice. Some described only being able to access and engage by using more expensive options, such as taking taxis, signing up to more expensive pools or gyms, or having to buy "last minute" tickets because of fluctuating impairments.
I've joined a private gym now. One that costs a lot more but can guarantee that you can get into the pool.
I can be absolutely fine today but I don't know...[how] I'm going to be tomorrow...So what you end up doing is not buying something until the very last minute but then you're faced with usually the price is steeper when you book closer to the time.
Some participants also noted incurring extra costs and lack of available choice when shopping. For example, budget shops were often said to not provide home delivery, and some had to sign up for more targeted (but expensive) online delivery slots where their impairments required this.
You can book very specific times, but it costs me to do that. It's not a free service. If I say, 'Please come during 6pm and 8pm,' I pay more than, say, somebody who asks for them to come, you know, on a normal day, or weekend deliveries. You have to pay more for those things. So, although I have come across it, I have to pay more, and again, I'm on benefits. I cannot afford to pay more. I'm already having to use the service very begrudgingly.
Emotional, time and physical costs
Access restrictions and the advanced preparation required for making an outing possible were said to limit participants' sense of spontaneity and freedom.
You just go but you have to think about everything, and how are you going to get there, where's the parking? Is it suitable for a wheelchair? So, it's a bit of a minefield, everything, you've got to plan. So, spontaneity, I suppose, has gone out the window.
Participants with fluctuating impairments described difficulties with preparations, as they did not know how they might feel day-to-day. Some participants felt they needed to plan for a day as if they could be experiencing their worst symptoms.
It can give you notice, sometimes it can just not give you notice. You can be out for a week, you can be out for a month, so it's navigating a lot of uncertainty and restrictions. I guess knowing that, when you agree to plans it's always a 'maybe', it's never really a 'yes', because you don't know how you will feel on the day of it.
Participants who had limited energy made trade-offs between different tasks they could do, resulting in them being unable to engage with some activities.
It's easier to plan, and to anticipate, like, where I would be able to spend more or less time, or evaluating trade-offs, so it's like, 'Is doing this activity worth it to me, for the energy-, for whatever reserves I have left?'.
For me, anything that is very tiring requires a very long recovery period. So, if I get overtired or overstressed or a combination of both, that means that sometimes for the next three hours I just have to lay down, and switch the lights off, and do absolutely nothing because I cannot stand, I cannot walk, I cannot see. So, it's a lot. It's quite big. To me, anything that pushes my strength means the rest of my day is gone.
Some participants noted that the preparation required to access and engage came with physical and mental costs, including exhaustion.
But, while I'm doing all this working out ways of improving my life, which I'm doing all the time, doing those sort of things can make me extremely tired, because my brain's constantly trying to think of ways to improve things to make life easier.
The lack of choice and flexibility to be able to undertake activities limited participants' ability to engage fully with different areas of life.
It's silly wee things that you take for granted whenever you are able to walk up and down or run up and down the stairs, or go to the shops just at the drop of a hat. Whenever you have challenges, physical challenges, or emotional, mental health challenges you really notice the difference when you can't do those things. And it's the psychological effect that they have on you is sometimes harder than the actual pains or the anxiety or whatever, you know, the feeling of you're, I don't want to say a failure as such, but you're just not able to do what you should be able to do.
Disclosure and vulnerability
Some participants reflected on a conflict around needing support but not wanting to have to ask for it. Asking for help was perceived as requiring disclosure of disability which contributed towards perceptions of being different and potentially vulnerable. This was particularly complex for those with invisible impairments, and those who did not identify as disabled when needing to ask for help.
I want to pretend that I'm a normal person. I feel like it's an intrusion of privacy... I feel that if people know that you've got disabilities you can get treated differently.
It's a balance in terms of being able to be equal to everyone else but at the same time for them to be aware that you do have an issue that they have to accommodate. It's just quite difficult, because sometimes I don't want people to know what I have because I don't want people to feel sorry for me. I just want to be able to do things myself, but I think maybe more can be done.
While some participants accepted the need to disclose their disability to get support, doing so could still come with feelings of frustration, discomfort, fear and shame. Some participants described feeling vulnerable to potential negative judgement when asking for the support they need based on past experiences.
It's that fear that your request is going to be rejected or criticised and I have had that from some venues... there's a cynicism about the need to have a personal assistant or a companion in order to access the event or access the venue. And I've been made to feel uncomfortable unnecessarily in that request. But it's basically provision under the Equality Act...Some places, they require you to provide evidence which... makes sense because you need to prove your eligibility... And sometimes they demand that you bring the original copy with you... So, if you're going to a concert..., you have to show that Personal Independence Payment (PIP) entitlement letter, showing all that detail, rather than having a more short form that says you are currently in receipt of PIP... You're having that conversation at a kiosk with a huge queue of people behind you at a concert, not ideal in terms of respect and confidentiality for me. A lot of people, and sometimes myself, forgo claiming my entitlement for accommodation because of the embarrassment.
When accessing leisure centres, some did not feel welcome, that they were judged, equipment and classes were not adapted to individual needs, and they were uncomfortable about asking for help from staff.
Even going to the gym is really very problematic, there isn't any kind of allotted time for people with disabilities. You can come in and take things more at your own pace...But, for me, it can be a bit embarrassing. When you go there and people think, 'Why are you walking on a treadmill,' or 'Why are you on the exercise bike going at a very leisurely pace?' It looks almost lazy and nonsensical, but it's actually, this is the pace that I can go at... it is something that I think that if there's a certain time,, where you don't have to verify to every single person, 'Actually mate, you know what, I do have a disability, just because you can't see it doesn't mean I don't belong here'.
However, some disabled people with visible impairments provided examples of where assistance had been offered without having to explicitly ask for it. This offer of help appeared moving and surprising, and was linked to those individuals extending care, courtesy, and support. Empathetic and supportive staff were described as making a beneficial difference to experiences of access and engagement.
I was in [a supermarket] with my mum and I had my walking stick with me and she was just ahead a wee bit with the trolley and actually there was an assistant walking down the aisle and she actually offered, did I want any help? She didn't realise I was with my mum and had offered to go and get me a basket and, you know, she would go around with me and help which totally gobsmacked me because that's never happened before. I actually felt a wee bit emotional about it too, partly because my senses were in overdrive and it just totally surprised me... I think it's individuals rather than it sometimes being [companies], I'm sure they have policies for helping vulnerable customers but it comes down to the individuals to actually apply those, their own standards and manners and morals as well, I suppose.
Vulnerability was also described in relation to physical impairments and the need to depend on others for support to get about. Examples include earlier explored physical design barriers, such as gaining access to buildings and navigating restricted layouts. Where a trusted personal assistant may not be available, some participants found it difficult to ask for help from other people.
Having a disability or a physical impairment makes us feel vulnerable and it's very often that we feel the lack of patience and understanding from other people, empathy, and we suffer sometimes some kind of discrimination.
Vulnerability through self-identification was particularly expressed by those identifying as women and ethnic minorities. These participants described how their gender and ethnicity made them feel more vulnerable to discrimination or harm, in addition to that experienced through their impairment. I am an Asian visually-impaired woman, so I fit all those minority stereotypes, and I'm not confident, so it just affects things even further... it does make you more vulnerable. I'm not saying that the nation is racist, but you've got people judging you potentially, based on your skin colour, then coupled with the fact that you're visually impaired.. You've got the vulnerability linked to being a woman... coupled with the disability, I think there's definitely a web of complexity there. And I guess that's probably partly subconsciously why I do feel more vulnerable and why it puts me off using my cane and things.
7. Towards solutions
This section explores solutions suggested by disabled people to improve their access and engagement with activities, goods and services in the future.
Companies need to remember that disabled people have a lot of extra time we could be spending using your services, or in your shops. The money we have, companies are missing out on it... they are not remembering us. Not making us feel welcome.
Inclusive by design
Participants suggested the need for more inclusive design, particularly in physical spaces, to meet the needs of people with a diverse range of impairments. These included ramps as standard, improved toilet availability and access, and aisles sufficiently wide for wheelchair access.
Make the world more accessible, you know, ramps should be standard, they really should be standard.
Break rooms and access to quiet spaces were seen as important for participants with a range of impairments, and particularly for those who described experiencing sensory overload in large, busy, bright and noisy supermarkets.
If they had an area... almost a care room... a place I knew I could go to when I was feeling anxious... like a safe space... I can almost feel my [panic] attacks coming on sometimes, most times... if I can go somewhere safe and just sit down and breathe for a few minutes that would help massively, really massively.
Quiet times for shopping, leisure and exercise facilities were also seen as important. It was suggested that quiet times, which offer a calmer experience and more access to staff support, could be formalised to enable people with diverse needs to access goods and services.
I'd just love nothing more than going to a supermarket when it's about to close, when they start turning off the lights and they basically shoo people away. Those are the most relaxing times because there's less people, it's much quieter, they turn off most of the machines, it's just simple, in, out operation. I genuinely do think that kind of service would be very helpful, very optimal.
However, there were suggestions that more thought be given to when quiet times are provided, to accommodate a broader range of needs.
They used to have the quiet time a couple of times a day. I think that used to be quite early in the morning, and again, for somebody like myself with a brain injury, getting up and getting out of the house early in the morning is a no-go. It's not possible, it's not doable.
"Nothing about us without us"
Participants raised the importance of listening to disabled people with a diverse range of impairments and involving them in decision-making related to the design and provision of activities, goods and services that impact their lives.
We've got a lot to say, we are a minority, but we've still got a lot to say. And it's if people could listen to what we've got to say, we wouldn't have so many problems in the world.
Involving disabled people in service decisions was suggested as an important way of ensuring their priorities and needs are met, as well as enhancing their sense of choice and freedom.
I think more awareness that all of these things are decisions that include and exclude people...Often my biggest frustration comes down to people just not understanding that their experience of the world is not the only one...More than any physical change in particular, I think it's the listening to people and making the small changes that can be made.
Participants felt it was important for activities, goods and services to be designed with disabled people in mind so that they could actively participate without having to request adjustments or assistance.
I could say 'can you help me with this I'm disabled', but I'd rather not. I want to be treated the same. I would like society to be more aware that some people might need help, and don't put the onus on disabled person to ask for assistance. It should be on the person supplying the goods to offer, and then people can say yes or no.
Participants also suggested that physical spaces should be designed with an understanding of the diversity of disabled people's needs.
I very much believe that people who design things should actually understand who they are designing for because they don't.
Increased awareness and empathy
When asked about the change they would most like to see in the world, the majority of participants said they wished for better awareness and empathy from both service providers and the general public. Many participants reported a lack of understanding about the impact of various impairments, particularly those that are invisible.
I just feel like there's a lot of judgement or people judging me... I don't want to have to explain to everybody in the class, 'I've got this disability.' Although, in some ways it would help... it just feels like a bit of a hindrance and something that I shouldn't have to do.
Education and role models were seen by participants as key to improving awareness of different impairments, especially those that are invisible.
A lot of education needs to happen. We need people to start going, 'I struggle with mental health. These are the things I struggle with.' We need people out there, especially those that people will listen to, actually being open and honest about their struggles, and what they struggle with.
Some participants perceived the current public transport information campaigns around invisible impairments as potentially contributing to increased acceptance, and reflecting small steps towards to bigger societal change.
There is a solution that they have from London that's not necessarily for pregnant people but anybody with a visible or invisible disability. You can order [a badge] from Transport For London. It basically just says, 'Please offer me a seat.,' [but] it doesn't say why. The card version actually does say, 'Remember not all impairments are visible,' the card version actually does stress about invisible impairments. So I have worn that badge before when I was travelling on the tube and a lot of people do take notice of it. But obviously we shouldn't be in a position where... unless you are wearing a badge, you can't sit there... But it's a stop-gap thing. It would be better to take on board the mindset of society into accepting invisible disabilities rather than just have people begrudgingly let you sit there because you're wearing a badge.
Meaningful help
Offering discreet and meaningful ways of declaring needs was seen as a positive solution for some participants. Others felt it might be preferable for people to be more aware and sensitive to everyone's needs for support, including those of non-disabled people, rather than disabled people having to identify themselves.
With a magic wand, I think making more people aware that people do have needs that they're too afraid or embarrassed to ask for help.
There may never be a single way of declaring additional needs that suits everyone. Participants felt it important that any approaches to declaring additional needs be as discreet as possible, and bring direct benefit.
In terms of businesses, bringing in some sort of a system where you can identify yourselves as having a disability without having to discuss it...either have some sort of a card that they can issue, or, if you have a lift, just let everyone use it, or train your staff so that if someone says that they have a disability, don't challenge them.
It was felt to be important to make support readily available, enabling disabled people to be comfortable and confident in asking for it. Suggestions included things such as signs in supermarkets or clearer signposting to help on websites.
The likes of the supermarket even having a poster on the walls saying, 'If you need assistance, please come and ask.' I think that would be useful, it would be helpful.
To reduce the emotional and financial burden on disabled people, participants suggested increasing the flexibility of customer services, and communicating clearly and consistently about options for accessing services.
Making getting access easier and, sort of, make people aware of what access is available. So that information is more widely available and then the access is easier to get.
Participants suggested that understanding and accommodating support needs for all customers might make life better and easier for everyone, not just disabled people. Additionally, they felt that acknowledging everyone's differing needs and preferences could alleviate the pressure on disabled people to disclose their impairment in order to access the required support.
Everybody knows somebody with a form of medical condition, even if they don't associate it with being disabled. So, I think people have some experience of it, even if it's not first hand and therefore, we shouldn't shy away from having these conversations. And I think with that transparency, I hope will come a greater ability for disabled people like myself to feel more confident to open up because I think a big part of that barrier is that stigma and hesitation.
This research has provided a snapshot of disabled people's needs and priorities for access and engagement, and their proposed solutions for how barriers may be removed. Disabled people have a diverse range of individual experiences, and understanding and accommodating people's needs could enable fuller and more meaningful participation, with potential benefits for businesses and society as a whole.
Nôl i'r tabl cynnwys8. Disabled people’s experiences with activities, goods and services data
Disabled people's experiences with activities, goods and services in the UK: sample information
Dataset | Released 14 July 2022
Sample information for qualitative research on disabled people's experiences with activities, goods and services in the UK.
9. Glossary
Disabled people
In this research, we use the term "disabled people" to refer to those who took part in this research. This includes people with different impairments, aged 18 years and over.
As recommended by the Inclusive Data Task Force (IDTF), we adopted the biopsychosocial model of disability in our approach to barriers. This approach recognises the role of environmental factors in the creation of disability, as well as the relevance of associated impairments and their effects.
Impairment
To define an impairment in this research, we referred to the Government Statistical Service (GSS) harmonised definition; this identifies impairments based on activities a person cannot perform or has difficulty performing because of their health condition or illnesses.
The GSS harmonised questions were asked of participants in the recruitment process, meaning that impairment status is self-reported.
Participants were asked if any of their reported illnesses or conditions affect them in the following areas:
vision (for example blindness or partial sight)
hearing (for example deafness or partial hearing)
mobility (for example walking short distances or climbing stairs)
dexterity (for example lifting or carrying objects, using a keyboard)
learning or understanding or concentrating
memory
mental health
stamina or breathing or fatigue
socially or behaviourally (for example associated with autism spectrum disorder (ASD), which includes Asperger's, or attention deficit hyperactivity disorder (ADHD))
Activities, goods and services
In this research, "activities, goods and services" are considered to cover a range of private sector provisions, including:
shopping - for food, clothes, or anything else; online or in person
entertainment and leisure
banking and utilities such as energy companies or phone providers
restaurants, pubs and hotels
sports and exercise facilities
services including going to the hairdresser or hiring a plumber or electrician
Digital exclusion
In this research, digital exclusion refers to how people described their access and engagement experiences.
In addition, the Government Digital Inclusion Strategy (2014) identifies four requirements for a person to be considered digitally included, which are:
access: the ability to go online and connect to the internet, which includes issues relating to accessibility, location, cost, technology, devices, infrastructure and language.
skills: the ability to use the internet safely and effectively, which requires literacy skills, digital skills (see Annex A for details of the 'Essential Digital Skills Framework'), security skills and confidence
motivation: wanting and agreeing to use the internet, which relates to perceived risks, necessity and benefits, including financial, social, health and well-being benefits
trust: for example fear of crime, misuse, online harms, and including issues relating to identity, security, standards and reputation
Those who are digitally excluded are lacking in one or all of access, skills, motivation or trust to engage digitally.
Nôl i'r tabl cynnwys10. Measuring the data
From February to March 2022, Humankind Research conducted 56 in-depth interviews with disabled people across the UK on behalf of the Office for National Statistics (ONS). Humankind Research is an independent research agency specialising in research for charities and government bodies.
The research process included two stages for each participant. These were a 10-to-15-minute pre-interview briefing call, and a 75-minute in-depth interview.
Approach to sampling and recruitment
A maximum variation purposive sampling approach was used to gather a wide range of perspectives relating to access and engagement with activities, goods and services. The sampling frame for this research therefore included:
those with a variety of impairment types
a range of locations (across the UK, rural and urban) and ages
a spread of self-reported gender identities
people from minority ethnic groups,
people with different employment statuses
This approach was used to explore how these different characteristics may shape access and engagement experiences. The sample information in our accompanying dataset provides information on the characteristics of participants, for the planned and achieved sample.
Participants were primarily sampled based on their self-reported ease of access to activities, goods and services. This was captured by adapting the Life Opportunities Survey questions on identified ease of access, categorised into three groups, which were:
less significantly impacted
significantly impacted
very significantly impacted
In each impairment category, we aimed to include one less significantly impacted, two significantly impacted and three very significantly impacted participants.
Participants were recruited using the Government Statistical Service (GSS) Impairment Harmonised Standard's nine impairment categories, which were:
vision
hearing
mobility
dexterity
learning, understanding, or concentrating
memory
mental health
stamina, breathing, or fatigue
social or behavioural
Participants were recruited through a professional, independent recruiter using a pre-existing panel who have agreed to be contacted for potential research participation on the topic of disability and impairments.
Design and materials
A 10 to15-minute pre-interview briefing call was held with participants prior to the main interview. This was to outline the research process in detail, ensure informed consent, and ask about any adjustments that participants required. Participants were also provided with a list of prompts to help prepare for the interview, including examples of activities, goods and services. The participant materials used in the in-depth interviews are available on request from equalities@ons.gov.uk.
A participant-led, conversational approach was taken in the 75-minute interviews, to allow participants to discuss their daily lives and what was most important to them. The flexible interview format accommodated the specific needs and preferences of each participant, for example regular breaks, support from a personal assistant, and the potential use of a British Sign Language interpreter. Participant preference for interview mode was discussed during the pre-briefing call, with most interviews then conducted by Zoom (41), and the remainder by phone (15).
Two expert advisory groups guided the research to ensure that all research materials reflected the diverse needs of those living with impairments. The "experts by profession" advisory group included academics, policy colleagues, disability charities and regional stakeholder networks. The "experts by experience" advisory group included disabled people with relevant lived experience.
Approach to analysis
In-depth interviews were audio recorded following participants' consent, and were then transcribed verbatim. Interview transcripts were analysed thematically using coding to identify themes, patterns and concepts within participants' accounts. Initial interview transcripts were coded using open, descriptive coding, with initial codes being organised into a coding framework. This formed the basis of continued analysis in NVivo 12 (QSR, Australia), with codes being further developed and adapted as analysis progressed. Findings were constantly compared within and between cases to test and explore initial themes, and differences were actively sought.
Strengths and Limitations
The main strengths of this research are:
the qualitative research design enabled better understanding of how barriers are experienced, the impact they have on people's lives, and disabled people's perspectives on what could help in the future
flexible, participant-led approaches to interviews enabled exploration of the perspectives of disabled people themselves, rather than testing predetermined hypotheses or exploring predefined areas of interest
approaches to interviews and materials used were adapted to meet individual participants' needs and to try to maximise accessibility
familiarity and rapport were built using a pre-briefing call to introduce the participant to the research and the researcher
support from advisory groups throughout the research process ensured the appropriacy and relevance, maximising the potential benefit and minimising potential risk of harm
The main limitations of this research are:
the generalisability of the research findings are limited to the concepts presented by participants, which also may not apply in different contexts or settings, and may change over time
although sampling was based on primary impairment, most participants described having multiple impairments; this limited the opportunities to provide insights around impairment-specific barriers, while also highlighting the variety of people's experiences, and complexity of navigating multiple impairments day-to-day
we actively sought to include those with a wide range of characteristics to explore how these may affect people's experiences individually or in combination; because of the range of characteristics across a small sample, limited interpretation can be made into the influence of specific characteristics such as gender identity, ethnicity and location on disabled people's experiences
recruiting through an existing research panel may have excluded those who do not usually participate in research, and recruitment and interviews also predominantly took place online, which may have excluded those who do not have internet access from participating in this research; however, findings on digital exclusion undermining access to online services suggest that certain relevant experiences may have still been captured in the research
Acknowledgements
This publication represents the outcome of a collaborative effort. The Centre for Equalities and Inclusion Qualitative Research Team are grateful for the expert advice, contributions and assistance provided by many people throughout this project. Most notably, our "experts by experience" and "experts by profession" advisory groups. Our experts by profession group comprised Bethany Bale (Disability Rights UK), Mark Carew (Leonard Cheshire), Rachael Graham (Sense), Phil Hastwell (Scope), Michael Potts (Regional Stakeholder Network North East), Mark Priestley (University of Leeds) and Ed Warner (Motionspot).
We would specifically like to acknowledge the help provided at important stages of the project by:
Jess Lister, Tom Silverman, Cleo Henry, and Kerry Poulson - Humankind Research
Marc Verlot, Louise Miles, and Armineh Soorenian - Disability Unit, Cabinet Office
Thomas Shakespeare - The London School of Hygiene and Tropical Medicine
Nicholas Watson - University of Glasgow