A Story
Grownups often said what a lovely brave boy Jack was. He didnât really know why. The children at school said different thingsââwhatâs wrong with your face?â or âweirdoâ, or some other stupid thing. Sometimes a few of them called names, pretended âitâ was catching, screamed and ran away, then said it was just a game. Especially if he had been in hospital for some surgery on his face and the swelling hadnât completely gone. Though Jack was used to how he looked even he thought he was a bit scary weird then. Teachers usually stopped the game when they found out, eventually. Once, during circle time at Whitegates Primary, Mr. Davies talked about the ways that people could be different and what it meant, and Jack had a chance to explain his difference and how he was born that way which helped. Luckily, another girl in the class talked about her difference too, which was a relief. Then she wanted to hang out with Jack all the time, but she was a bit annoying so he tried to avoid her. He felt sorry when she cried, but also fed up that everyone thought they should play together because they were both different. There was more to friendship than that he thought! Usually he made one or two friends, never any of the really popular people, but there were always a few odd ones in every class, quiet or sad or awkward. Or just smarter than everyone else. They were more interesting and they got used to him. His dad was in the army, so he had been to a few schools and knew how to get by, act tough when he needed to. When things were really bad, he found ways to be on his own, reading, playing games, making things, or out in the wilds if he could find any.
He was in the last year of primary now, and due to go to secondary school in the autumn. Things had got better here over time, and everyone in the class seemed OK with him mostly. Jack and his friend Nick liked to play in the fields behind the houses, which led all the way up to the woods at the top. From there they could see far away to Oxford sometimes, and watch the kites circling in the thermals. Both of them loved birds, and Nickâs dad worked at the bird sanctuary. It was here he learned how to hold them on his arm in the field, release their hoods and let them fly. It was the most fantastic feeling he knew, even better than running and shouting in the dark on the way home. He felt his heart lift with them and imagined what it was like to soar free above everything. Getting them to return to the lure was a bond, a connection to something wild. It was a safe place.
Like his dog Jessie, the birds didnât care what Jack looked like, it was just about trust and heart and fun. He thought that was probably a kind of true love because his mum and dad often said the way he looked didnât matter, and not to mind when people said silly things. Mum said that when people get to know you they see who you really are. That made sense to Jack, because with every operation he looked a bit different. He thought one day the surgeons might make him look normal, which would be a relief though it shouldnât matter.
Generally, Jack was fine. There were just a few things that really bothered him. Like never being picked for the football team, when he thought some of the others who got picked regularly werenât as good. Nick was often picked, but he deserved it and Jack went to games to cheer him on. Sam, who was always in the team liked the glory, but Nick worked incessantly to set up the shots and made him look good. That was the way things seemed to work, Jack thought, some people had it easy.
It was Saturday evening, Jack was propped up on his bed, the room was quiet, but he was in turmoil, thinking back over the events of the last couple of days, trying to work out exactly how things had changed. Also playing Morrowind in a slightly distracted way, his eyes misting over when he thought about certain things, making it hard to see the screen. He always played this game when he wanted to be somewhere else in his head. He was a prince now with territories to defend.
This Friday at football practice was pretty much like all the others. Jack had enjoyed the game, scored a couple, wasnât picked. But on Saturday morning the phone rang. Dad answered, and Jack heard him say, âIâm sure it will be fine. He can look after himself.â He put the phone down, came into the kitchen where Jack was still eating the pancakes Mum liked to cook on Saturdays and said âSam has twisted his knee, so youâre on the team for this afternoonâs friendly match at Marlow. If you like.â Mum made a face at Dad and said âyou know how rough those games can beâ trailing off. Dad looked at her, then Jack, and said âdo you want to?â âYes!â he shouted, running up the stairs to get his kit. Dad followed and said more quietly âDonât do anything that would worry your mumâ. Jack knew what he was talking about, and just shrugged. âIâm always carefulâ. Mum worried about him falling, or being in a rumble, getting hit or something that would mean more surgery.
They arrived at the club with just enough time to get ready. Running out, Jack felt a bit weird to be actually on the pitch, instead of watching with the others. Mostly family of people playing. Nickâs sister Kate was there, chatting to Chloe, Ted, Josh and a few others. Dad of course. Mr. Gates the team coach finished his talk with âJust do your best boysâ and everyone ran out. The whistle went, and once they started running and passing it felt like being back on the pitch at school, only more intense, more surprising. The other team were pushing hard, but Jack felt confident they had them. Nick and he fell into a rhythm, passing between them up the pitch, the goal was open, and Jack scored. Yay!!! Huge cheers, and in the corner of his eye saw Dad going mad on the side, taking photos. The others clapped Jack on the back, hugged, and he considered trying a triumphal knee skid, but decided not. The game was on again, and the others were trying even harder to get a goal back now. Jackâs team were doing well, lining another one up, but Ted slipped on the mud and it bounced off the bar. On and on, as each team struggled to keep the ball out of their end and attack the goal.
At half time they were 1â0, feeling tired, but still determined to win. Running out again for the second half they were all convinced they could do it. Jack didnât know quite how it happened, but the other side seemed to find a gap really quickly and suddenly it was 1â1. They were triumphant, and now Jackâs team could see them pushing harder. They had to do something! Nick and Ted set off towards their goal, passing tightly between them, the Ted to Jack, Jack to Nick, now in a sweet spot, and he put it in like a professional. A goal worthy of a knee skid, they had pulled it back. They needed another one to be safe though, and they struggled on through a second half which seemed much longer than the first, never quite getting the ball in, but neither did the other side. Just before the whistle Nick passed Jack a sweet cross, a space opened, and the ball was in. Everyone on their side erupted in hysterical cheers, they heard the final high-pitched screech, and it was all over. The other team trudged despondently off the pitch, but they were surrounded by their cheering friends and family, with the Dads looking as if they had scored the goals themselves. Jack was not used to this, not quite sure how to handle it, but felt fantastic at the same time. Even the girls looked at him differently he thought, and Kate said âyou were really great, I didnât know you could play like thatâ. âNeither did Iâ said Jack, blushing slightly, and the girls laughed as they turned away. As they walked off he heard Chloe say âHe fancies you! I bet he would ask you out if he could. Poor you, what would you say?â And laughed teasingly. Kate said âDonât be like thatâ and then Chloe ran off shouting âYou do too, you doâ, with Kate following ânot him!â
Jack watched them, suddenly feeling as if someone had slipped a small blade between his ribs, a stabbing, shaming pain.
Back in his room, turning it over again in his mind while battering a few monsters in Morrowind, he decided he wouldnât go to the leaving disco after all. The only problem was how to explain it to Mum and Dad.
How We Define Differences Makes a Difference
Jack is a regular young boy, with some unusual experiences. He isnât average in appearance and probably will never be, though at this age he may well think that one day the surgeons will pull off the final miracle. Heâs not hoping for good looks, just normal. Of course, like the rest of us, he might not be satisfied with that!
It will not be until he becomes a young adult he will really âgetâ that it probably wonât happen and he will have to live his whole life being different. Generally, this is the toughest time.
From this brief story the reader will note that Jack has already had a lot of experience of being different and come to some conclusions about what it means for him. These have come naturally, and like all our heuristics and biases have developed as a result of experiences. Some people have it easy. He is less likely to be picked. Being too different is risky. People can be thoughtless and cruel. He is resilient, and has learned how to find ways to soothe himself when things go wrong. He doesnât always share his hurt and disappointment, working out what he wants to do on his own.
Jack is about to make a choice to withdraw from an important event for fear of being hurt and shamed, and this could become a pattern. Imagine meeting Jack as a client in 10 years time. How easy do you think it will be to access these complex chains of experiences and decisions? How likely is it that he will remember?
Jack is visibly different and able bodied. âVisibly Differentâ is a relatively new descriptor for people that in earlier times might have been described as âdeformedâ or âdisfiguredâ in face and/or body and one intended to be value-neutral. This quite recent change shows an increased awareness, sensitivity and concern about the impact of naming. Not all activists agree with it, believing that previous crueller, excluding terms are a more accurate reflection of the judgements of ânormalâ society which needs to be confronted, not finessed away. Within the category of âvisible differenceâ there is huge diversity. Someone could be registered blind but otherwise able bodied, or a wheelchair user with a beautiful face, or the opposite. Each personâs experience and medical journey will be unlike most other peopleâs. Being born different is a world away from becoming different, having been ânormalâ, and this must be considered as part of any attempt to understand lived experiences.
From a medical/professional point of view I have listed in the Appendix the main forms of visible difference the reader is likely to encounter. Please remember that these are categories of professional convenience to some extent. Each âcategoryâ contains a diversity of presentation and severity. Many now have charities associated with them and I have gathered the main ones in the âResources, Support and Informationâ section at the end of the book.
About This Book
The material offered here covers a lot of ground, some of which may be less relevant to your current interest. Feel free to âskipâ to the chapters which attract you first. This may initially be the Chap. 8 case studies if you have a current client in your clinic that you want to do better with. Or possibly Chaps. 6 and 7 if you recognise a need to improve the therapeutic relationship and communication. As an experienced practitioner you may find the discussion of different therapeutic stances and models very brief, particularly in relation to your preferred approach. References are offered for those less familiar with some approaches who want to delve deeper. I hope it will be useful to the integrative practitioner, as well as those required to work mainly in one model, inviting consideration of a flexible method (within competence). This material has also been included to assist the curious reader less familiar with the technology of therapy. It is hoped that more experienced readers will also find something to stimulate a new approach.
Chapters 2, 3, 4, and 5 will be useful when you want to understand more about the context of your clientâs development. They are important because they will assist your reflections on the lived experience of someone who is born with or acquires visible differences.
The impact of our pervasive sociocultural context is considered in Chap. 2. It begins with a brief overview of how longstanding attitudes are both established and mitigated through accepted norms and cultural production. It then invites you to consider the way that younger generations are using social media platforms to challenge narrative biases which were all-pervasive in earlier decades. The chapter is structured to include âthink boxesâ with questions or suggested resources to stimulate your understanding and clinical work. Chapters 3, 4, and 5 explore some of the research relating to development and visible difference, the family context, and developing and managing relationships outside of the (hopefully supportive) family group. These are offered to deepen your understanding of potential difficulties at different stages, which your client may not associate with current presenting issues.
Where Does Psychological Therapy Fit In?
It is important for the therapist to have sufficient understanding of their clientâs condition, and some awareness of the range of possible impact. But one of the potential weaknesses of the âtypologicalâ approach when planning psychological therapy is that it can create unhelpful assumptions and expectations in the therapist about their clientâs concerns and distress. At the point of assessment their presenting problem may be unrelated or have a tangential relationship to their visible difference. If there are useful connections to be made, this needs to happen at the most helpful and acceptable moment for the client. A blunt and clumsy attempt to make a connection may feel stigmatising and cause your client to feel that the therapy agenda is not shared. However, the association may be there, as part of the individualâs whole orientation to the world, or self-concept, and it is helpful to have this in mind as a possibility for future reflection.
This underlines the importance of history taking as part of the assessment process, and the creation of materials, for instance a genogram and timeline, which can be revisited later if needed.
One useful question is whether the client has been offered or had therapy as part of their hospital or outpatient experience. The answer may depend on their age at the time of treatmentâif it was a congenital condition counselling or therapy may have been offered to the parents not the child in the first instance. Their current age is also a factor, as the understanding that psychological support is necessary for good adjustment has not reliably been supported with funding in the UK. In 2020 the offer of therapy services differs between presentations and is very restricted. Specialist therapy services, where they exist, are most usually found in a hospital outpatient setting and are not evenly spread throughout the country.
The real process of ongoing adjustment and understanding will be very different for someone with...