An estimated one in five people in the UK are disabled. So, on average, all counsellors and psychotherapists are likely to be contacted by a disabled person seeking therapy at some point in their working lives, all things being equal. Which they are not.
As any person with a disabling condition will tell you, the barriers to goods, services, spaces and opportunities that non-disabled people regard as an automatic right are myriad, physical and psychological, and often insurmountable.
And counselling and psychotherapy are right up there on the list. A random search of the BACP directory (for counsellors who work with, say, depression) produces 11,000 practitioners; put in a request for those who say they work with ‘disability’ and it drops to 4,000; search for the term ‘disabled access’ and it drops to 1,900. On the Counselling Directory, it’s very similar – within a 20-mile radius of central London, there are 5,000 practitioners who say they work with depression; 2,000 specify disability, and 452 say they can offer wheelchair access (the BACP directory currently doesn’t offer a search filter for this, but BACP is working on it). Outside London (Birmingham, for example), the figures are 454 for depression; 212 for disability and 64 with wheelchair access.
This is a very imprecise way of searching for counsellors who offer an accessible service to disabled people, but it is all that is available to the average disabled person who is setting out on what many experience as a gruelling, distressing and sometimes hopeless quest.
One such is Ashley Cox. He is 25, blind since birth, and hit national newspaper headlines back in 2019 when he wrote an article describing his struggles to find a private therapist who would work with him:1 ‘Having no idea where to start, I ventured into an online counselling directory and picked a profile at random. I repeated this process eight times, but each time was rejected. In every case the rejection related to the disability… The reactions varied. Most were courteous enough to state their uncertainty in handling the disability as a reason, yet were unwilling to proceed anyway, despite assurances that we could work together. Some were patronising, downright rude, or suddenly had no space available, while one simply hung up without another word.’
Sadly, when I contacted him recently, matters had not improved. He found a therapist, eventually, back in 2019, but she could only offer seven sessions. They were incredibly helpful, and put him on a sounder footing to manage the psychological issues that had previously led him to the point of considering ending his life, he says. But when he started searching again this year, he met with a similar reaction, only more so. ‘Six months down the line, I wanted more therapy. I tried someone who was recommended but we weren’t a good match. So I went back to the directory. There are 187 therapists listed in my local area and so far I’m 56 in. I keep a spreadsheet to track the responses. None of them so far seem to want me as a client.’ And, he says, 83% have ticked the ‘disability’ box on the list of their areas of specialist practice: ‘To be honest, I’ve noticed most therapists just tick all the boxes, so I don’t even look at them as criteria any more.’
Katy Evans, who has cerebral palsy and uses a wheelchair, reported a similar story in a blog in December last year on the BACP website:2 ‘A directory search for local in-person therapy generated 505 therapists but when I filtered for wheelchair accessible therapists, just 141 remained, less than 30%. In fact, most directories didn’t have wheelchair access in their filters. My experience isn’t unique. I know one wheelchair user whose search result threw up just four accessible therapists,’ she writes. When I spoke to her in January, she had had 120 rejections, but not all because of lack of wheelchair access.
The rejections themselves make things worse, she points out. Most people seek therapy when they are very vulnerable anyway: ‘I have attachment trauma from my early life and it plays into that. And I’ve not had a good relationship with NHS mental health services – they deem me “too complex”, so whenever a therapist tells me no, it ignites all that again. And it’s frustrating as it’s something I cannot change. I can’t just get up and walk.’
Access and attitudes
The Equality Act 2010 does not provide an automatic right to access. Service providers are legally obliged to provide ‘reasonable access’ to goods, premises and services, but it is the provider, not the disabled person, who gets to say what is ‘reasonable’. Cost, practicability and lack of resources are all good reasons to say no, whether you are a lone practitioner working from home or for a charity or independent organisation. Public services, such as the NHS, would of course have a tougher time claiming any of these reasons as exemptions.
But, as Evans points out, it isn’t just getting into the building and counselling room; it’s the journey there too. ‘So much labour goes into getting there, negotiating the barriers, organising personal assistants (PAs), accessing public transport. Sometimes I feel mentally drained and exhausted before I’ve even got there, and I don’t think that’s fully understood.’
And, of course, it’s not just about physical access. As many disabled people will tell you, having got into the building, there are numerous other non-physical barriers that stop or discourage them from getting any further. Cost (many disabled people are unable to work full-time so may be on a low income) is a big one as regards private therapy, but no less mountainous are the attitudes and understanding of therapy organisations and individual therapists. Ticking the box for disability on the BACP online directory is no guarantee that the premises and procedures are accessible and that the therapists are equipped to work successfully with a disabled person. At present, holding BACP accreditation does not mean an individual or organisation can be compelled or even encouraged to do what is needed to make this happen.
Steve Rattray, who is blind and a BACP senior accredited therapist who works with and has used counselling services, says he would rather individuals and organisations just said so, if they aren’t accessible. ‘What I’ve experienced is they say “Yes, not a problem,” but they’ve not got a clue. And if I raise it, it’s “Thank you for letting us know, we will see if we can change things,” and nothing happens.’
Boundaries and defences
Lack of basic knowledge and understanding about the impact of being disabled (and all the different kinds of impairments, including hidden ones, chronic pain and long-term and intermittent conditions) are widespread. Says Evans: ‘I did see a therapist who specialised in disability, the only one with that background, and it was very different. She could identify with the social barriers and internalised ableism. Sometimes she could identify it better than I could, and I really need for that to be challenged. Society is inherently ableist. It’s set up for non-disabled people and we are expected to fit ourselves into that, and when we can’t do that, we can feel a lot of shame, that we should be able to do this, we shouldn’t be a burden. But she was really able to recognise that, whereas a lot of other therapists see me in the wheelchair, see my condition but don’t go beyond that. And, to be honest,’ she says, ‘it’s the social barriers and attitudes that are a bigger problem to me than my impairment.’
Essentially, what she is describing is the social model of disability. Josh Hepple, who also has cerebral palsy and spoke about his views on counselling and disability at the 2021 BACP AGM, summarises it thus: ‘Cerebral palsy is my impairment. Impairment is the medical condition. Disability is a social construct. I am either a disabled man or a man with an impairment. It’s far more powerful to say disabled man as that describes it as an act of disablement by the society and environment we inhabit.’
Says Evans: ‘Often, I’ve felt like I am educating the therapist – it’s more than just telling them my history. It’s like I am training them, and it’s in my therapy hour – I am paying for that, and meantime I’m not getting the support I need.’
Professional rules and practices can, ironically, present another major barrier and knowledge gap. Evans says: ‘I’ve met some therapists who didn’t want to do a home visit because they said they’d been advised it would transgress their professional boundaries.’
Third-party involvement is also an issue where therapists frequently fall short, says Mel Halacre, a psychotherapist, director of the disability support organisation Spokz People CIC, and author of BACP’s good practice resource on working with disability:3 ‘There is a lack of awareness around the involvement of third parties. We aren’t trained to consider their involvement at all, but you have to because of the closer relationships disabled people have with parents, professionals, PAs, the NHS, social services and so forth. If you want the therapy to be helpful, you have to involve them.
‘What if a client’s parent stops bringing them to therapy because they don’t like that their child is getting more assertive? If I know there is some third-party involvement – for example, with a parent or PA – I will ask the client if it would be helpful to involve them in some way, perhaps with group sessions at the beginning to talk everybody through the change process, or I might offer them some therapy, if the client consents. But some therapists say no, it’s breaking boundaries, and won’t do it.’
But therapists who do liaise with third parties can get that very wrong too: ‘At the end of the session, I can feel like I am a child being handed over to another adult,’ says Evans. ‘I’ve had some therapists who tell the PA how the session went, which is totally inappropriate. One said, “Oh it was a good session today and next week we are talking about boundaries,” and that was awkward because it was my difficulties asserting my boundaries around the PA that I wanted to talk about!’
The therapist’s own conscious and unconscious fears, prejudices and biases are another barrier. But prejudice is natural, says Mel Halacre, and she cites Brian Watermeyer’s work: ‘As humans, difference is something we find hard.’4 ‘We all have prejudices and act them out,’ she says. ‘But a lot of therapists struggle when faced with the anger of the disabled person. A lot of our consultancy and training work at Spokz People is about helping therapists understand the social model and where the anger is coming from, as well as becoming more comfortable with their own relationship with disability. The therapist’s job is to validate that anger because it’s an accumulation of all the negative experiences in disabled people’s lives. If you only see disability as a medical issue, it just stops at that person.
‘Joy Oliver’s research5 has shown us that what most disabled people struggle with emotionally is not the disability but the psychological impact. It’s the segregation, the continual assessments from government bodies that don’t liaise with each other, and people’s attitudes. What they need is a therapist who understands all that and can say, “Yes it’s OK. I understand you’ve been silenced and here is a space where you can voice that anger and you are not going to be silenced.” Difference makes us all uncomfortable, disabled and non-disabled therapists and clients alike, but we can learn to sit with and work through that discomfort for the benefit of our clients.’
Says Evans, ‘When I ask therapists how they will work with my disability experience, many individualise it and explain how they would help me change my thinking to overcome my difficulties. This won’t change the reality that inaccessibility and ableism are everywhere. I want someone to hear my anger that so often gets silenced and sit alongside me in the injustice.’
Ideally practitioners should have training so the client doesn’t effectively have to educate them at their own expense. ‘If you do feel out of your depth, the best thing is to own it,’ says Halacre. ‘At least you are being open and frank, and you can either continue to work together at a reduced fee or say honestly that you need to get trained first and refer them to someone else – although that’s a challenge because there are so few.’
Pushed away and silenced
Something that many disabled people stress is that their coming for therapy doesn’t have to be all about their disability, and frequently it isn’t. Steve Rattray says that what he needed from a therapist when his fading sight was really impacting on him was, yes, help with overcoming the barriers it raised, but also help with finding himself again, when so much of his identity (work, hobbies, relationships) had been stripped away. ‘Losing my sight opened up so many questions for me about the rest of my life. It took me a good two or three years to find the actual person I was again and to come to terms with it.’
Josh Hepple, who has a background in law and is an active volunteer at his local Samaritans branch, says: ‘I think it’s important to separate out the actual therapy. I talk a lot about anger and disempowerment in my therapy sessions. Cerebral palsy does mean I have to rely a lot on other people, and so of course disability has a part in it, but that feeling of disempowerment and how to process it and not let it mess up your health and relations with the people around you, that is universal, not to do with being disabled. Everyone brings their own stuff to therapy and so, disabled or not, the therapeutic process should remain quite similar – or that is the theory anyway!’
He does a lot of consultancy work on access for arts venues and events, including the Edinburgh Festival, as well as charities and other organisations. ‘In my experience, and it applies to private therapists too, those who want to be accessible will find a way, and those who don’t care about equality won’t do anything, whatever you tell them. I think it needs more stick than carrot now, which is sad. But someone who wasn’t prepared to make the effort probably wouldn’t be the best therapist for disabled clients anyway,’ he points out.
Another response that really annoys him is what, in the disability world, is called ‘inspiration porn’. Essentially, it’s when able-bodied people get off on how ‘brave’, ‘courageous’, ‘extraordinary’ and ‘wonderful’ disabled people are to do something that would be much less remarkable if they weren’t disabled. ‘Give me three practical take-aways that you will implement; don’t just listen to me, feel good about yourself and then never think about it again,’ Hepple says.
Halacre understands much of these reactions as being driven by fear. ‘Anybody can become disabled just like that – it triggers fear that it could happen to you one day,’ she says. ‘That leads to push-aways: either a refusal to take on disabled clients, or a refusal to sit with the reality of what the client is saying – “I need to see that you are OK so that I know I will be OK if it happens to me.” And that silences the disabled person from sharing their anger and sadness.’
Perhaps those most frequently silenced by the medical profession are people with chronic, long-term ‘hidden’ illnesses and impairments, such as chronic fatigue syndrome, endometriosis, lupus and fibromyalgia. Thalia Joyner had scoliosis as a child and was subjected to traumatising, intrusive surgery in her early teens. She then suffered further spinal injuries in a motorbike accident and, 10 years later, having forged a career and had a child, lost mobility in both legs again that triggered a spiral downwards, and she was unable to walk for many years. She has since retrained and works as a therapist. So-called medically unexplained symptoms are most doctors’ nightmare; they defy their expertise. What gets overlooked are the impacts on the person themselves. ‘There is a lot of medical gaslighting and professional gaslighting,’ Joyner says.
‘Trust is absolutely vital with any client but especially with this client group. By the time they get to counselling, it’s often very far down a long and painful road. If counsellors have an understanding and experience of working with these conditions, it could empower the client on their journey. People will have gone through the mill of the medical professions and been told it’s all in their head; they’ll come feeling they must be mad, and it takes a lot of courage then to go into a therapy room. It’s so important to believe the client’s experience. They’ve had so much judgment in their lives.’
Might it be preferable if all disabled people could access therapy from a disabled counsellor? First, that is unlikely, given current availability, and the barriers to disabled people accessing training (another story, needing an article of its own). According to BACP’s 2021 member survey, some 11% of its members are disabled. But, anyway, it’s the relationship that matters, surely? Shouldn’t disabled people have the same right to access the same breadth of choice as a non-disabled person? Why should every disabled person want a disabled therapist?
This is, essentially, what all the disabled people I spoke to felt. Yes, there can be advantages if your therapist is also disabled and so understands what you are experiencing on a daily basis and why it might cause psychological distress. You don’t have to waste (pay for) valuable therapy time explaining. And yet, as Josh Hepple points out, ‘disabled or not, the relationship is with the therapist. To me, what is important is whether the therapist is competent or not and if they are someone I can relate to therapeutically. I don’t even know if my therapist is disabled but that is not my concern. He is just very good at what he does.’
Oliver Ward sits in both chairs, as a disabled client and a disabled therapist. He retrained as a counsellor after he had to leave his job in banking, when he was affected by a degenerative condition that means he now uses a wheelchair, and set up in private practice offering accessible online counselling – which, he points out, most counsellors are now doing because of COVID. He does not think that only a disabled counsellor can work with disabled clients. ‘That would be like saying you have to have experienced domestic violence yourself to work with survivors of domestic abuse,’ he argues. And there is a danger for the therapeutic process in a client’s assumption that their disabled therapist will ‘know what they mean’ automatically because they too have had that experience. ‘Some disabled clients may think that, because I am also disabled, I must know what they are going through, but we are all individual. I can’t assume I automatically understand someone else’s experience. It’s easy to get into a situation where the client says, “You know what I mean”, and the therapist just says, “Yeah, yeah”. It closes down further exploration.’
For Joyner, it’s an ethical issue: ‘It is instilled in counsellors that it is not ethical to work with certain clients if you don’t have the training, experience and knowledge. I understand the theory about Rogers’ six conditions and unconditional positive regard, but would you work with a client with an eating disorder or trauma, say, based just on the conditions? The relationship is important, that is where the change and the magic is, but you need the knowledge and wider understanding to deliver the ingredients. To work ethically, therapists need specialist training, in case congruence and empathy manifest as pity.’
Specialist knowledge is particularly key for Deaf people who use British Sign Language (BSL) and need a sign language interpreter if the therapist isn’t BSL proficient. Victoria Nelson is a qualified psychotherapist who was born profoundly deaf (she also now has a cochlear implant) and was brought up orally. She wasn’t able to learn sign language until she was in her late teens. She knows very few therapists who can sign fluently enough to practise without an interpreter, and only a couple of profoundly deaf qualified psychotherapists. She set up an award-winning therapy service, Deaf4Deaf, when she qualified as a counsellor in 2016, which brought together a team of signing therapists all over the UK to offer therapy to Deaf people. She is now in the process of establishing a new organisation, SoundMind-UK, which will specialise in a wider range of disabilities and offer therapy with therapists with those conditions. ‘The idea is that we specialise in shared lived experience,’ she says.
She argues that it is necessary for a therapist to have personal experience – certainly for Deaf people: ‘It’s not just the language, it’s the cultural understanding. A Deaf therapist will understand about the oral tradition and BSL – a hearing therapist won’t get that cultural nuance, which matters, especially in couples therapy when the couple are from different traditions. Deaf people say they have to explain things to the hearing therapist before they can get on to what they came to therapy about. I don’t ask Deaf clients about their deafness – it might come out through the therapy, and if it is an issue we can deal with it, but we can work on what they are bringing immediately.’
Can do better
So, how can the counselling profession do better? Josh Hepple would like to see BACP actively encourage private counsellors to ensure they offer accessible premises. He also thinks therapists should include more provision in their contracts for disabled people around issues like cancellations, lateness, missed sessions and other traditional ‘boundary breakers’. He’d also encourage therapists to pause and reflect before they tick – or don’t tick – the ‘disability’ box.
Katy Evans gives a very simple example of flexible, creative thinking: ‘Take a video of your venue and let clients decide if they can manage it, rather than just tell them they can’t. Clients know their capability better than you do.’ She also encourages flexibility and being imaginative: ‘I know a lot of therapists work from home and are limited by where they live and that can’t be helped, but I do think some thinking outside the box is needed. I met with one therapist in the park and we did therapy that way.’
More training in the impact of being disabled would help, says Ashley Cox. ‘I’ve done sessions with local counselling colleagues, going into colleges and talking to diploma students. I think people are too afraid to ask questions in case they say the wrong thing or say something that’s politically incorrect. Sometimes we need to ask those questions to learn. If we don’t talk to each other, we’ll never learn. If sighted society doesn’t talk to me, you’ll never learn about my disability.’
Mel Halacre wholeheartedly agrees that there isn’t enough disability training. Spokz People has just launched an online platform for people needing therapeutic support, with interactive psycho-education programmes and a peer support community (www.spokzpeople.org.uk/register). It will be launching an online training hub and networking/peer support platform for therapists later this spring. Another networking initiative, the Disability Psychological Practitioners Network, is already up and running on Facebook.
Halacre, along with Steve Rattray, is on BACP’s Equality, Diversity and Inclusion Task and Finish Group, which is working on improving BACP’s responses across all the ‘equalities’ groups. Areas the group is focusing on include training, mentoring, placements and supervision, accreditation, events and CPD. It will also be revisiting the Good Practice in Action resources, Halacre says, and the online directory, to consider how access can be best described and communicated to potential clients.
In essence, this is a social justice issue, says John Barton, who has Parkinson’s and is a practising psychotherapist and a member of the Therapy Today Editorial Advisory Board: ‘Disability is not a pathology. If you are a therapist, you presumably believe in human potential, and support, empathy and compassion. On what grounds do you turn disabled people away? What are you afraid of? You may have to change your therapeutic frame slightly, or your boundaries, but so what? Get over yourself. This is about ordinary humanity.’
In short, before you tick the disability box, ask yourself: ‘What do I know about disability, and about myself?’
Next in this issue
1. Cox A. I needed mental health support but eight therapists rejected me for being blind. Metro 2019; 30 June. bit.ly/3nSMQ9X
2. Evans K. Getting into the room is the first hurdle. [Blog] BACP 2021; 7 December. bit.ly/3rL1DEy
3. BACP. Working with disability across the counselling professions. GPaCP 007. Lutterworth: BACP; 2020. bit.ly/3tLScrg
4. Watermeyer B. Towards a contextual psychology of disablism. New York: Routledge; 2013.
5. Oliver J. Counselling disabled people: a counsellor’s perspective. Disability & Society 1995; 10 (3): 261–280.