Tom BALCHIN – Interview by Times Supplement 2013

On Stroke and Disability

Do you think people who have disabilities are judged at face value?

There is a belief that prejudice towards disabled people is widespread. Concrete evidence comes from the Office for Disability Issues report ‘Evidence from the British Social Attitudes Survey’ from 2009. It found that many respondents expressed views that suggest they see disabled people as less capable than non-disabled people. I think it’s completely natural that we make a primitive link in our ‘comparison-led brains’ between others who are different from ourselves, bodily or other, as somehow ‘lesser’. This is one of the prime motivators of successful bodybuilders: when they report their childhoods, it becomes clear that many were bullied or had other issues which led them to devote their time towards building up physical and very obvious ‘armour’ against the outside world.

There are many people with disabilities who go along this same route. You only had to watch the Paralympics to see the diversity of people with coordination problems, paralysis, amputations, visual impairment and people who have a mixture of types of disabilities. They had made themselves into the best they could be. But I am certain many never did what they did to ward off the judgement of others, but purely for themselves and a way to cope with complex difficulties disabilities tend to bring. The public reaction to the athletes was incredible, and the legacy was most probably was that there will be people who won’t look at a disabled person the same way again. However, the public often cannot tell that someone is disabled by just looking at them. This is an important point: some people live with disabilities that can be managed relatively easily on a day-to-day basis that give scope for working full time, with the appropriate support. Other conditions (many of them invisible) mean that a full time vocation is virtually impossible to access and maintain.

Do you think the public treats people with disabilities unfairly?

I think I need to refer again to the ODI’s report, which shows that three quarters of people interviewed thought of as disabled people as needing to be cared for some or most of the time. This suggests that a degree of ‘benevolent prejudice’ exists towards disabled people. I deal with acquired brain injury patients and their families every day and I’m happy to report that for most stroke survivors, the community is actually a very supportive place, without which they could not operate and prejudice is less obvious. So many support groups and charities exist to help and a tremendous amount of public goodwill is evident. I’m actually very hopeful indeed. People who are disabled will probably agree with me that they rank public perception as low on their list of daily worries .

Why do you think we live in a culture like this, where people are so afraid of others with disabilities and therefore judge them easily?

I’m not sure that we are really afraid of others with disabilities. I don’t see that. I am aware that prejudice towards people with mental health conditions and learning disabilities is acknowledged to be higher than towards those with physical or sensory limitations, but it is heartening that the most unexpected arenas are not afraid to show their direct support. For example, a group of strongmen and grip experts ran a competition (Britain’s Most Powerful Hands), watched by the public in direct support of my charity, at the Octoberfest in Basingstoke last year. They raised over £400 and public support could not have been better. I entered myself and did fairly well: I managed to rip my hands open twice, necessitating two visits to the St. John Ambulance tent! Over the years, groups ranging from school children to prisoners have decided to raise money to help our charity. This is hugely heartening to me as a full-time volunteer who is so busy helping others that I have no time to actively raise money for the charity too.

How do you think sufferers can overcome this prejudice?

All indications are that overcoming prejudice is about developing ‘attitude’ and taking the positive mental attitude from those who are successfully living with disabilities like myself. Often those with disabilities take it upon themselves to stick their heads above the parapet and put themselves on public display… and win people over by the power of their personalities. I saw this on display this very afternoon as I watched television with my baby daughter. We saw a children’s presenter with one arm and no prosthetic to ‘disguise’ it. I had been glancing to and from the screen in between spoonfuls for at least five minutes before I spotted it, due to the way she held complete disregard to her disability. It was great. A unifying similarity amongst successful stroke survivors is not cognitive or affective, but willingness to strive for goals deemed ‘unachievable’ for them by those around them. They refuse to live by a presented life theme. This has the effect of mediating their current limitations and may promote psychological adaptation.

One example is, although this may be a contentious remark, the moniker ‘disabled’ may be negative as a self-description. It can suggest. ‘…I’m hiding my potential to adapt and get on with life’. It can indicate, ‘…life is being ‘done unto me’, rather than ‘…I’m right here, doing life’. It seems to imply that there is little chance of progress… and imparts finality and permanence to the current situation. In order for the vast majority of the public to secure the right kind of funding they need to live their lives (and for funding bodies to discriminate between causes), this term is of course essential. But the term ‘disability’ should probably be reserved for those who have lost their sight or a limb for example: we encourage stroke survivors anyway to remain detached from it, and use it only as another tool in their successful stroke survivor’s armoury if they need. Parking spaces for disabled people should, for example, be used with impunity!

Does the institute prepare people for the prejudice they may face after a stroke, as well as the physical side of treatment?

Yes. My aim is to turn survivors into successful stroke survivors who understand that their minds are the most powerful weapon they possess against the effects of stroke. They can cope with hard work, which is the trigger for neuroplastic change, combined also with other interventions as they can be found. But hard work must be countenanced. The ARNI Institute has over 120 instructors across the UK who will go into the homes to rehabilitate people after the hospital therapists must finish due to the limitations in time and resources.

Their task is to help patients prove to themselves that their physical state can be positively changed via retraining and application of the correct strategies. They are able to accept that they are doing the best they can to help themselves. We say that having had a stroke usually means previous daily routines disappear. They are different now. But ‘different’ does not automatically have a negative connotation. They also have a rare chance to manipulate their whole lifestyle and presentation as they rehabilitate. Most survivors will carry some limitations for life, but they don’t have to be become lesser people than they were, simply because they have less ability to move around, less strength and less ability to do tasks. Building up ‘growth’ mindsets is the way to prepare stroke survivors for coping with any predjudice: knowledge is power. ‘Mindset’ by my colleague Carol Dweck at Stanford University is a great source that we direct survivors to.

When you were paralysed were you ever treat unfairly?

I must say that when I was in a wheelchair, being wheeled around London, I got so annoyed with people who would not look at my in the eye and consciously put their heads down. It actually put my recovery back a bit. I didn’t want to go back out, even though that had been my goal since I could swallow solid food again. I managed to get out of a wheelchair as soon as I could, but I never forgot this awful impression that I received when I was recovering. Since then, I always smile and nod at a person in a wheelchair, whether they want it or not! My big tip to anyone is to do the same for people in chairs – you won’t believe what a sincere nod or eye contact will do to help the person get through their day. Eyes sliding to the side is not what they need.

Do you have anything else you would like to add which you think may be relevant?

I must also say that quality of life coping with disability is not just achieved with improved strength, range, co-ordination and balance but by having meaningful relationships, having a job, being a good parent or sibling and engaging in leisure interests. All of which depend on having cognitive capacity, strength, endurance, new skills and new ways of doing things. The successful stroke survivor, for instance, participates in daily life by learning new skills and building the required adaptive strategies. The thing is, patients never know what skills or adaptive strategies are required unless they place themselves in a slight position of risk when training for the pavement arena. This is what we do at ARNI. We want people to cope with life being physically different. They are trained to cope with tension and marginality. They are shown how to research sources (primary and secondary) concerning their situations. They are taught that they need to be able to countenance operating in different arenas without distinguishing between them (eg. ‘I’m only ever going to be fine walking around indoors with a stick’ will not be enough) and ‘win’ lots of self-set battles. This process is iterative: success builds upon success. This basic psychology stuff makes the world of difference. It can ‘set-up’ the pattern and expectation for coping with incapacity and being the best you can be.