Katy Evans has finally found a therapist. Back in December 2021, Evans, who has cerebral palsy and uses a wheelchair, posted a blog about her attempts to find a therapist in the Birmingham area where she lives. She needed wheelchair access and wanted in-person therapy, because of her communication difficulties. She also has a psychiatric diagnosis. Of 505 possible therapists listed on the national directories, 141 said they offered wheelchair access. When I spoke to her, 120 had turned her down, for a range of reasons, not just access.
I emailed her again in March this year. She’d finally found a local therapist who could offer wheelchair access and would see her in person, and was not put off by her mental health diagnosis. It had taken 18 months and she’d logged more than 160 rejected contacts.
When we spoke, she was still in the early stages of working with her new therapist, but she knows the continual rejections have scarred her, and she and her new therapist are having to work through that: ‘I’m aware that I am trying to be the “good client” and not be too demanding. I am frightened constantly that she might reject me, like everyone else has, and that has been affecting the therapy a bit.’
Some 14.6 million people in the UK have a disability, an estimated 22% of the population – that is, to use the official Government definition, ‘they have a physical or mental health condition or illness that has lasted or is expected to last 12 months or more, which reduces their ability to carry out day-to-day activities’.
Disability is associated with poorer mental health and wellbeing, as measured by markedly different scores for life satisfaction (6.5/10 compared with 7.6 for non-disabled people); for feeling that life is worthwhile (7/10 compared with 7.9 for non-disabled people); for happiness (6.4/10 for disabled people compared with 7.6 for non-disabled); and for anxiety (4.6/10 for disabled people compared with 3/10 for non-disabled). They are also much more likely to report feelings of loneliness (15.1%) than non-disabled people (3.6%).
The disparities can be seen at every level and in every aspect of life and opportunity – particularly education, employment, housing and social participation. The most common impairment is mobility (46%), followed by stamina, breathing and fatigue (33%) and mental health (29%).
If ever a population group was justified in seeking help from a profession and healthcare intervention that claims to ‘change lives’, surely disability is it?
And yet there is a massive dearth of knowledge about how many disabled people access counselling, how easily they access it and, very importantly, how helpful – or unhelpful – they find it and why.
Ensuring disabled people can access the benefits of therapy is a major part of BACP’s equality, diversity and inclusion (EDI) strategy. This was launched in March this year, with the statement that ‘as the UK’s leading professional body for counselling professionals, we aim to lead on best practice in EDI, creating a profession where our members, colleagues, staff, partner organisations and clients can thrive and fully be themselves’. This month sees the publication of a new Good Practice in Action (GPiA) resource which, alongside updated existing resources, will set out very clearly, individual and organisational members’ legal duties under the Equalities Act and their ethical responsibilities to make ‘reasonable adjustments’ to their premises and practices so that disabled people can benefit. There is also a lot of work going on behind the scenes to make BACP’s own registration, accreditation and professional conduct procedures and processes more accessible to people with learning disabilities and different accessibility needs.
In addition, BACP will be conducting a review of the research to gather data on the questions asked at the start of this article. BACP Good Practice Lead Tina Williams, who heads up this part of the EDI work, says: ‘When we were reviewing the existing resources, the issue was constantly raised about members’ apparent reluctance to make reasonable adjustments, particularly when first approached. So we decided to commission a new resource to look at this, and to focus it on the needs of private practitioners in particular, as organisations tend to have more resources to deal with the issue. Part three of the Equality Act makes it unlawful for any service provider – and this includes counselling services and private practitioners – to discriminate in how they afford access to someone with a protected characteristic, such as a disability, or in the quality of the service provided or how they advertise their service. You are not allowed simply to say, “No, there’s nothing I can do”.
‘The new resource includes a checklist of what you need to consider right from the start when setting up in private practice, including what you put on your website and in your directory listings; what you tell your clients when they first contact you, whether you know they have a disability or not; what to ask in the initial assessment when you first meet; what are the best digital platforms to use for your online work, as not all are suitable and some are more suitable than others, and when in-person sessions may be more suitable. The mindset we are promoting is in the spirit of the Ethical Framework, which states very clearly that our members should seek to “overcome barriers to accessibility, so far as is reasonably possible, for clients of any ability wishing to engage with a service”.
‘We are not telling members to make adjustments that may conflict with their modality, but we do ask that they have looked at what adjustments they can make right from the start so that they are in a position to respond to the needs of the individual clients when they seek their help, not after the event.’
Anticipatory duty
Steve Rattray, a senior accredited BACP member who specialises in palliative care counselling, reviewed and wrote the new resource. He is sight impaired, and has worked with BACP as a consultant on its EDI materials for many years. ‘One of the things I experienced as my fading sight started to really impact me was this presumption that a person without any personal experience of disability knew what I needed better than I did and expected me to be grateful for what they felt was appropriate. So many disabled people I speak to have experienced the same thing. They decide what we need and they decide what we get. And that’s it. But the Equality Act changed the focus – yes, the final decision about what reasonable adjustments are made rests with the provider of the service, but the law gives us the right to stand up and ask for them. Providers cannot actively ignore our access needs.
‘But much more important than that, the Act empowers disabled people to experience an inclusive society. If you want to engage with someone and make real progress to change, they have to feel safe and they have to feel heard. When the doors open, suddenly you feel you can be part of the world,’ Rattray says. ‘What I find so frustrating is that making reasonable adjustments is not always complicated or expensive. It’s not about rebuilding your clinical space to provide wheelchair access. Very often it just requires a bit of preplanning. So in the new resource I’ve looked at the different things we can do. How can I make sure my practice is accessible? Do I need to put any physical aids in place? Are there any barriers that people might face? Are there people I need to engage with? If a new client is coming with a condition you’ve no knowledge of, do you have somewhere to go for advice? And ask the client how you can change things. Would it help to move the chairs away from the window because of the light or external noise? Would it help to install some kind of hearing support? If someone has an impairment, ask how they would prefer the space to be arranged right at the start.’
Clare Goodridge originally trained as an architect specialising in inclusive design. For many years she worked in the disability sector and as an access consultant and local authority access officer to ensure design standards, regulations and their implementation (whether in new build or refurbishment) met the needs of the whole community, including disabled people. Nine years ago she decided to train as a counsellor, and she is now in private practice.
It’s not easy for therapists,’ she agrees. ‘When I’ve needed to hire therapy rooms myself, I’ve looked at so many in London, and the majority seem to be up or down steep stairs. And very often what are advertised as accessible counselling rooms just aren’t when you get there. I’ve had to rent rooms in non-therapeutic premises just because they were accessible, but often they aren’t suitable as therapy settings because of what is going on in the rest of the building, which impacts client confidentiality.’
For small counselling businesses, accessibility is often seen as an additional expense because it’s not in the budget, she says: ‘The tendency is for people to try to make special arrangements when the situation presents itself. But that is not an inclusive service
The legal duty is anticipatory. The service provider should be proactive, and should have been since the Disability Discrimination Act came into effect in 1995, and then the Equality Act in 2010. We should all be thinking, “What should I do to ready myself or my organisation? Do we have a plan as to how we are going to be ready for clients – and therapists – with impairments of all sorts, within a reasonable timescale?”
‘It’s not up to the service provider to decide what is “reasonable”,’ she says. ‘There are standards and guidance out there. That said, even where those standards are met, you still have to respond if someone comes along and says, “That doesn’t work for me”. And that should feed into the next phase of your organisational development. Having a plan and implementing it should not be a one-off event – it needs to be a dynamic and evolutionary process. When we train as therapists, we talk ad infinitum about the importance of providing a safe space for clients. What is a safe space? Somewhere I feel welcome. I’m not going to feel welcome if I’m asked to go in a back door and the disabled loo is full of cleaning equipment or I have to make very complicated arrangements about when and where my appointments take place. Philosophically we should be seeking to create an inclusive society. We should have moved on, as we should have done with race. It just doesn’t seem to occur to many people that they might find themselves working with someone who is disabled. If we rent rooms with other therapists, we should all acknowledge that we have a shared interest in making the premises fit for purpose and negotiate with landlords accordingly. Inclusivity should be seen as a key principle of good business.’
Goodridge says all members can start by considering their publicity, websites and directory listings. ‘People use all sorts of unhelpful woolly phrases about being “disabled-friendly” and “wheelchair-friendly” – what does that mean? Access needs to be spelled out in terms of what it guarantees. There should be a baseline and that baseline needs to be black and white. Either your premises are accessible according to British standards, or they are not. And it would help if BACP spelled out what members should be doing as a minimum, so clients don’t face rejection and aren’t pushed from pillar to post.’
BACP member Becky Hedley has a progressive degenerative condition, a form of muscular dystrophy. She recently began using a wheelchair at work to enable her to continue in her role as pastoral lead for safeguarding and mental health in a primary school. She feels that therapists are not providing enough information for disabled clients seeking therapy: ‘I started looking round locally to see what other therapists were putting on their websites. There were a few people who said their premises were accessible but not in any detail – they used words like accessible or disability-friendly, but that still puts the onus on the disabled person to find out what that actually means. If the information isn’t there, then it’s down to the person with the disability to find out if they can go or not. If the information is there in the first place, you can at least make an informed choice, which is what everyone wants to do, really, isn’t it.’
Attitudes and assumptions
‘As well as improving access to therapy for disabled clients, we also need to make it easier for them to see a disabled practitioner, if that is their choice,’ says Helen Rutherford, who runs Emotional Respite disability counselling service, a therapy service staffed by disabled therapists that is specifically aimed at disabled people seeking therapy. Rutherford is an accredited member of BACP and an electric wheelchair user who has spinal muscular atrophy. She set up the organisation as an act of principle, to highlight the absence of a visible disabled presence in the therapy profession. To her, it’s a social justice issue: ‘Disabled people should have the choice to access a level of empathic understanding, knowledge and validation of their identity and experiences as disabled people. They should not be exposed to that feeling of being “other” when they seek therapy.’
She and her four associates work online, partly because video, audio and email therapy are the most accessible forms for many disabled people, and partly due to COVID precautions. She trained back in 2007, the only disabled student in her cohort, and struggled then with some attitudes she encountered among her peers and tutors: ‘Some students implied that they couldn’t believe that I could be OK with being disabled. I’d come to that place through many years of therapy, self-development and reflection, coming to terms with it, working through my trauma and grief, but there was this sense of disbelief – they couldn’t put themselves in my position and think they could be OK with it, so I wasn’t allowed to be OK with it,’ she says.
There are all these internal biases likely to be at play. And there’s the assumption that the disability has to be the problem, for the therapist and for the client. Personally, my disability is just a small part of who I am. When someone comes for therapy, I check in with them and we work with what they bring. I do not assume that they are coming to talk about their disability.’
She wants to see her non-disabled peers doing more training and personal work on the issue: ‘CPD on working with this complex group is really important. It’s really not acceptable for someone to say they don’t want to work with this group of people because they don’t feel comfortable with it. That says to me they have a lot of work to do on themselves around their own prejudice around disability and their own fears. Maybe it brings up anxieties about their own mortality or it feels too uncomfortably close to them. That was something I had to go through myself. I had to question if maybe I was too close to this subject to be able to facilitate the work effectively before I concluded that I was competent to work with disabled clients.’
In 2015, Rutherford co-founded the Disability Counsellors Facebook group with another therapist, Emma Thompson, for those specialising in working with disability. It has since grown to more than 600 members. ‘There is this network of disabled therapists that is untapped. It’s a place where we can network, share CPD resources and also talk about how we navigate working as disabled therapists. Disabled therapists need a much greater presence so we aren’t marginalised within our own profession,’ she says.
Abigail Denny decided to train as a therapist after she suffered a massive cerebral bleed in her early 20s. It came out of nowhere and meant she had to relearn how to walk and talk, essentially challenging her brain to find different ways to control her movements and speech. She still struggles with balance and speaking, and with fine motor skills.
She was in hospital for a very long time, sharing a room with another young woman, who later died – she just lost hope and gave up the struggle, Denny says. That was what propelled her into training as a therapist. ‘Our whole world has been turned upside down and we are having to come to terms with the fact that we may not walk again and struggling with communication – people not listening to us and not hearing us, which is incredibly detrimental – and we were left to deal with it ourselves.’
Denny is trained in person-centred counselling but has since added to that through CPD and further training to offer a more integrative practice that allows her to be more flexible in meeting clients’ individual needs and preferences. ‘I had a long-term counsellor who worked from a purely person-centred foundation, and for me that worked. However, I felt if I went to her with a practical problem she couldn’t develop an intervention that suited my needs. She could just work on that person-centred level of non-judgmental, unconditional positive regard but couldn’t help me in day-to-day life. I needed more directive help sometimes.’
Hidden disabilities
Mental health issues are very commonly associated with disability – in part due to the challenges thrown up by society’s failure to take on board disabled people’s needs, and partly because disabled people, through childhood and beyond, are more vulnerable to the adverse experiences such as abuse, victimisation, bullying and exclusion, as well as unemployment, poverty and poor housing, that are known to affect mental wellbeing.
Katy Evans has been given a diagnosis of dissociation disorder, which she says stems largely from her childhood experience of being seen and treated as a dysfunctioning body with no thought for her as a person. She also experienced sexual abuse. She doesn’t agree with the diagnostic system, and feels it’s the diagnosis that has often barred her from accessing the mental health support and services she has needed, including counselling. It’s been used as a reason not to offer her therapy when she’s contacted potential counsellors.
‘How I am is I think an understandable reaction to the things that have happened to me and how I’ve had to adapt to survive. Labelling it as a disorder makes a natural adaption “other”, which creates unnecessary alarm and fear, leading to exclusion. I’ve found that when I mention the diagnosis to therapists, straight away they go, “No, I can’t deal with that.” I try saying the biggest thing I need is another human being, I don’t need techniques. But it’s like the diagnosis became a massive red light flashing above my head. And it’s really tricky getting a balance between being open and honest so they can make a decision based on their capabilities and not scaring them. I find that really challenging. Because I don’t want to be with a therapist who I feel I have to be reassuring all the time that I’m not going to kill myself or something.’
Even if they aren’t a specialist, they should be willing to admit it and discuss it with her, she says. ‘The therapist I am seeing now has been quite open that she isn’t particularly trained in it but has had clients who have had dissociation. She says if I’d come 20 years ago she would have no, but that experience has enabled her to feel confident to sit with it a bit more. When I trained in counselling up to level three, we were told, “Anyone with a diagnosis, you refer on. No questions asked.” They never said who you should refer on to. And now I’ve become that person, and with a disability as well, I feel I can’t fit in any box.’
Neurodivergence
Neurodivergent people can also struggle to access therapy, because of their widely different and very specialised needs. There is also a common perception that neurodivergent people cannot train and work as counsellors. This is very far from the case. Callum Jones successfully completed postgraduate level training and is now doing a doctorate while working in private practice. But when training, he frequently felt as though his neurodivergence was like some kind of ‘dirty secret’: ‘There’s almost this suspicion around us – “Why are you here? You can’t be a therapist”. I remember one person saying that I didn’t look very autistic and I thought, am I supposed to present in a certain way, to tick every box that fits?’ he says.
When he ‘came out’ as neurodivergent while training, in the spirit of congruence and authenticity, he says he felt rejected. ‘I was referred off to the disability advisory department, who were brilliant, don’t get me wrong, but they were a different department – I wanted the person who was training me to sit down and tell me where I could be helped.’ His plea to the profession is to open its eyes to what neurodivergent people can bring to it: ‘BACP says, “Counselling changes lives” – I agree with that. Therapy is a place for change. So let it change the lives of neurodivergent people, as clients and as practitioners as well.’
Tracey Cleary is utterly convinced that counselling changed her life. As a young mother escaping domestic violence, with two children aged under four, when her GP referred her to the counsellor working from his practice, ‘it was the first time I felt truly heard. It was a pivotal moment in my recovery,’ she says. Today, some 20 years later, she is a qualified counsellor supporting students at the University of the Highlands and Islands Inverness, where she herself trained, inspired by her own experience of counselling. It’s a common enough story, except that Cleary is neurodivergent, as are her children, although she only thought to get a diagnosis 10 years after they’d been diagnosed. ‘It really helped me understand myself and the struggles I had. And that’s why this job isn’t really a job and why it’s so important to me. I am able to support other people to make the best achievement that they can and see how education can support them in their mental health recovery, and that getting out into the community can help your mental health even if you are struggling with your anxiety and your fears. There is a way of being what you can be and a productive member of society.’
She was, she says, lucky in her choice of university to study at. ‘My tutor was a very experienced social worker as well and was very good at making the accommodations I needed, academically and practically, in terms of physical adjustments.’
The university’s wellbeing service goes above and beyond to reach out to its neurodivergent students, Cleary says: ‘For in-person work, we try to create a quiet, calm space wherever possible. We’ll switch to a different room if a student finds outdoor noises, or sudden or loud noises, difficult. We try to avoid other little things that maybe colleagues have not considered to be important, such as heavy perfumes, distracting jewellery, hard lighting. We use a white noise machine that can play all sorts of other noises at different volumes.
‘During COVID when we were forced online, we found that appointments dramatically increased because it made counselling accessible to people who were so anxious outside their comfort zones that they couldn’t seek counselling. We could have a video conversation and they’d still be in their comfort zone, which supported them to explore what was happening for them. We don’t insist they have their cameras on. We go at their pace. We ask what they prefer. And when they are ready to try it, we can support them to try out in-person counselling. We desensitise it, to make it easier for them to get used to it.’
But above all, it’s the basic fundamentals of counselling that worked for her and that work now for her student clients: ‘The biggest thing is people need to be genuinely, genuinely non-judgmental and unconditionally accepting; they need genuinely, genuinely not to flinch when you say something that some people might find out of the ordinary and just take it in their stride. We might say, “That’s fine,” but our body language says something different; our faces and eyes say something different, and that can be picked up very quickly.
For further support in exploring these issues, the online ‘Working with...’ event, ‘Increasing inclusivity in your practice’, takes place in July. Find out more.