This article appeared in the Autumn edition of ‘Counselling Matters’ for the National Counselling Society
What are some of the common misconceptions around disability and relationships?
There are lot of misconceptions around disability generally, when you add sex and relationships into the mix there is almost a double whammy of taboo and stigma. A lot of the misconceptions stem from nondisabled people’s fears around becoming ill or disabled and then projecting these fears and anxieties onto the disabled person. Research into the hierarchy around disability shows that when, for example, someone is comfortable having a disabled colleague, the closer this relationship becomes e.g. when it becomes an intimate relationship the anxieties and reluctance to engage become more apparent. It is also still true today that many people believe that disabled people are unable to have sexual relationships or that it is a challenge if you are in a relationship with a disabled person.
As I have been married to a disabled person for 14 years and together for 16, what has been interesting to me is learning that there are challenges in every relationship, it is just that in ours the challenges are more visible to the outside world. I’ve actually found that because of living with disability, the trust and honesty of our communication seems higher than among my nondisabled peers living in partnerships. From very early on, my partner and I had to discuss many things to access venues and to make our relationship work and negotiate around many more issues that other couples can more easily avoid. This is one of the joys of living with disability: the opportunity to achieve great depth in relationships, with the right person of course..
Yes, of course, there are many hardships because of dealing with an inaccessible environment and a broken government support system which, if you need its support, requires you to go through repetitive degrading and traumatic assessment processes.
People commonly believe that my partner must either be rich or heavily endowed for me to be with him and likewise that I must be a Saint to choose to be with him. Like all fantasies and fears, none of these are true.
How to establish intimacy and effective communication in relationships
Communication in any relationship is vital. Quite often we do not communicate clearly about our wants and needs. Very often we are also triggered by past trauma which causes us to re-enact this in our closest relationships. To establish a truly intimate relationship with the other, we need to identify our triggers, ask ourselves how old we feel in a particular moment when we feel we might be overreacting. If we feel younger than our current age, this could be an indication of trauma re-enactment. By identifying past trauma we can then break the link with it and communicate more honestly with our partners. It’s also my experience that often we may be arguing about for example not tidying up, but underneath we are really communicating that we feel that our needs have not been met. Being able to dig underneath the surface issue is vital to establish an intimate relationship with a partner.
Being disabled does bring many stressors, which does mean we need to pay more attention to returning back to a place of rest. This may mean proactively working towards reducing stress and increasing experiences that give us rest and joy and relationships that make us feel good about ourselves.
How to approach dating as someone with a disability
When you look at the partners of disabled people there seem to be some common traits. Generally they are people who have experienced prejudice, trauma or a minority group experience in some way shape or form. They also seem to be people that are okay with being different and do not shy away from controversy. Though it is true that many disabled people struggle to find intimate relationships, the right person is out there, it just may take more time and energy to find them. Many partners state that their relationship with their disabled partner is the best relationship they have experienced in their life because they have had to address challenges other avoid and this has led to better communication.
How to pursue someone with a disability without making them feel stigmatised/fetishized?
As I say to all therapists when working with disabled clients, if you feel awkward or embarrassed about something disability-related, own it: bring it into the room. The same is true around dating as well. Like any person from a minority group, disabled people are generally very good at reading body language and ascertaining when someone’s words do not match their gestures and body language, so it is best to be honest
If you are nondisabled and come across a potential date that is disabled, you probably have lots of questions and the disabled person is probably used to people asking them. What can be helpful is to think whether you would like to be asked this question at this point in the relationship, to help you ascertain if it is asking the appropriate level of intimacy and vulnerability. Are you able to share an equivalent level of vulnerability in return?.
What can be done to reduce the stigma of dating with a disability?
This is a challenge as it is common that when a disabled person discloses their impairment (if it wasn’t already visible), that the number of people willing to go out with them reduces. There is much that we as a society can do to reduce the stigma around dating when disabled. As therapists we can for example include stock photography of disabled couples on our website (but first making sure that the stock photography is genuine, because often they use nondisabled people in temporary wheelchairs). If anyone would like to check out whether stock photo is authentic, I’m happy for people to contact me. Also, we are seeing generally an increase in the use of ethnically diverse actors in advertisements and movies. Similarly, if we see more disabled actors and models used in sex and relationship scenarios, this will help to decrease stigma. We can all lobby our favourite companies to ask them to use more diverse models and actors.
Me sharing my story as well as many others also helps to contribute to decreasing the stigma.
Personally, when we engage with our own relationship with difference and disability through personal therapy, supervision, training and engaging in disability art and culture, this also helps to reduce the stigma around disability, both for our own relationships and by passing on what we learn to those around us.
How can counselling/therapy help someone with a disability when it comes to building relationships?
I set up Spokz People CIC in 2009 when I travelled to exhibitions with my partner Steve for his business Spokz Ltd. Whilst on the stands selling his equipment, many people spoke to us and expressed sorrow at the lack of support they were receiving from medical professionals around mental health, well-being and relationships. This, as well as my literature review which shows that many disabled people experience poor therapy, encouraged me to set up Spokz People.
After I qualified and started working with disabled clients, I realised very quickly that the usual ways of working are often less effective when working with disabled clients. Disabled living can be complex and boundaries are often challenged and the strict boundaries that we are trained in as therapists are contraindicated with working with disabled clients in my experience. We need to work much more flexibly and holistically if we are to meet disabled clients’ needs in therapy. We also need to understand disability as a diversity issue in order to truly hear them and not provide another experience of oppression such as they experience on a daily basis in society.
When you have a baseline understanding of disability as a diversity issue, therapy can be extremely helpful. Myself and Steve have had individual and couple therapy many times and I’ve also worked with many clients around relationships. Some of the issues we have explored are:
- When to disclose an impairment or when it is visible how to bring it into conversation.
- Personal grooming if one is unable to do this oneself.
- How to maintain good body image and confidence in a society that tells you your body is different.
- Exploring ways to reduce the impact of past trauma on both sides of the partnership on sex and relationships.
- Improving communication skills between partners
- Identifying and communicating the benefits of being disabled: the close intimacy, the personal growth, the honesty.
- For couples it can be helpful to explore both parties’ relationship with disability, how they see each other and the impact of disability tasks on well-being, fatigue et cetera.
- Exploring creative ways to experience intimacy with their partner
- Challenges accessing NHS services around sex, fertility and relationships such as sexual health clinics and pregnancy and fertility services.
Dealing with intrusive and oftentimes traumatic involvement from medical and government bodies which impact on relationships and parenting. For example, generally disabled people are assessed as individuals. In our situation we need a specialist bed which at the time we couldn’t afford ourselves. We were refused a double bed by Social Services, even though we offered to pay for the ‘nondisabled’ share of the bed. In the end we found a charity who helped us get a double bed for our needs, but this process caused a huge amount of unnecessary time, emotional labour and stress. On our website we provide support for disabled clients as well as professionals working with disabled clients. Our work is centred around working affirmatively with disability. For professionals this means using our training to explore the skills, resources and meaning that living with disability can bring as well as reducing our own fears around our own bodily decline. For clients, we provide support around the common themes of isolation, fatigue and dealing with stigma and discrimination through our well-being community and programme.
We have a free short course ‘Common Disability & Therapy Myths’ and as well as other low-cost modules on our website here, which also includes a year’s access to forum support. We also have a free guide to working with disability and other resources which people can request via email on mel@spokzpeople.org.uk
