University of Edinburgh

Opportunities and Barriers for Deafblind People

Paul Hart
Sense Scotland, Glasgow

Presentation to Conference: Sex Education for Children and Young People with Visual Impairment including those with Multiple Disabilities,
Tuesday 11th March 1997 The Royal Blind School, Edinburgh

Before fully engaging in this talk I would like to express some thought on and an inherent dilemma in delivering any talk with the title given above. Whilst it is my intention to share the experiences of Sense Scotland, by the very nature of the work we do this in reality means sharing the experiences of individual deafblind people throughout Scotland. Therefore, throughout this talk I will attempt to avoid individual private details and will discuss a variety of issues where possible in general terms. However, in the interests of clarity and to minimise confusion it is impossible to avoid all detail and I apologise for that at the outset.

In the residential and day services that are provided by Sense, there are obviously going to be opportunities for relationships between our clients. There is also much that our clients need to learn about themselves and where they fit into the society in which they live. There are a variety of considerations that we have to take into account, but the principal purpose of this talk today is not to explore all of these considerations, but simply to focus on the information and education that needs to be made available to our clients, in order that they are in a better position to know more about themselves, more about their role and place in the world and to know more about developing significant relationships. I will look at the variety of opportunities that are around for our clients, but I will also highlight various barriers that have to be overcome if our clients are to readily access these opportunities. Some of what I will say today will be very positive and will demonstrate how Sense Scotland has tackled various issues, and found solutions which allow sex education to be delivered to our clients within the overall curricular framework of Personal and Social Development. However, I will also be highlighting a variety of barriers which we have struggled to overcome and for which solutions are still outstanding. Therefore, Sense's involvement in this conference today, is as much about seeking solutions as it is providing answers.

It may be useful in the first instance, to describe in a few words the client group that I will be focusing on today. Sense provides direct residential and day services for 35 adult clients at present all across Scotland. Most of these clients have a significant visual impairment and also a profound hearing loss. In addition most of our clients have a significant learning disability. Within this client group there is a wide spectrum of sensory impairment, ranging from those clients who have both residual vision and hearing, to those clients who have no useful functional vision or hearing. It is this wide spectrum that poses a real challenge to our services, and it is this wide spectrum that means that no one approach to sex education will work across our full group of clients. When I come later to discussing some of the real barriers that we face it is principally those clients who have a dual sensory impairment and a significant learning disability that I will be considering in depth.

I wish now to briefly turn the spotlight on some basic strategies which underpin the Sense Scotland approach to learning and education, not specifically at this stage focusing on sex education. These broad approaches are delivered to a greater or lesser degree according to the specific sensory impairments that any one client may have. What I will outline in the next few minutes will not apply in its entirety to all our clients.

Our first broad principle is our firm belief in the concept of experiential learning. It is vitally important that our clients learn by doing. It is vitally important too, that our clients learn by doing real activities, with real objects associated with those activities. For example, a young child may learn some processes about how to make a cup of tea, by using toy tea-making sets, all in miniature, with no hot liquids or any liquids at all involved. That involves a degree of abstract and imaginative thinking that is not always available to our clients. Similarly, we all learned some of the basic processes involved in shopping through play, and by giving other objects representational qualities. Thus, the Lego brick that I had as a youngster was sometimes a pound of butter, other times a Ferrari, depending on how extravagant that particular day's shopping trip was. (The hard currency was always the set stolen from the Monopoly Box!). Much of that type of learning is unavailable to our clients.

A second broad approach is to do with accessing these experiential learning opportunities. When I first learned how to make a pot of tea, I did it with supervision from my Mum. She would stand over me, and give verbal instructions. "Right, fill the kettle with water. Just wait for it to boil. Now you'll need to put tea bag in the pot etc etc." Again that type of learning is of limited use to a person with a dual sensory impairment. The experiential learning, the act of doing the activity often has to involve direct physical assistance from another person. Somebody will assist you to lift the kettle, someone will help you to fill it with water, and someone will help you to locate the tea bags. It requires a lot of hand-over-hand assistance. It is a time-consuming process, but one that can allow a deafblind learner to grasp all of the processes involved. For a deafblind person, there is little to be gained from a second-hand account of a process. So whilst a teacher may stand up in front of a class of 30 children and explain how to carry out a scientific experiment and then expect them to carry it out, this could not ordinarily happen in any of our centres.

A third broad approach adopted by Sense Scotland relates to the often passive nature of some of our clients. We have a philosophy of bringing the world to our clients. By this do not mean that we focus all of our work in one Centre and that clients never get to access other community resources. In fact, quite the reverse is true. What I do mean, is that on one level our clients will very often not be aware of objects that exist beyond their immediate reach, and on another level they might not be aware of activities and opportunities that are outwith their normal day-to-day routines. It is part of our responsibility to address both of these issues. We must provide new opportunities for our clients, and we must open up the world with all its exciting possibilities. For example, if we are on a shopping trip, we can see all of the choices that are available to us, but we need a way of explaining to our deafblind client the thousands of choices that he might make. This might mean exploring all the shelves, feeling some of the vegetables, doing some preparatory work before you go to the shop etc. As another example, if we are walking through a forest, we need to stop at every stage and explain everything that is around to be touched and smelled and experienced. And finally, if someone has never been horse riding, or swimming, or in an aeroplane, we could think up convincing arguments about why they should be introduced to this activity.

For almost any activity you could think of right now, these three broad approaches can work alongside one another and provide a potent educational mix, which can open up a great range of new learning opportunities for our clients. Let's consider, for example, how to introduce one of our clients to swimming.

If the person has never been swimming before, you can give no prior concept, no real introduction to what is expected. If it was a client with some useful vision, then we could visit the pool, and say: "Do you want a go at that?". There are other methods such as photographs, pictures etc, that could all be used to forewarn the person what to expect. If the person is deafblind, then you could perhaps build up gradually - normal bath, to splash pool, to hydrotherapy pool, to swimming pool. There is some preparatory work that could also be done. eg you can visit changing rooms beforehand, have showers etc. However, that first time in a great big pool, is exactly that . . . the first time in a great big pool. (As a small digression, the recent wave of leisure pools with sloping entries etc are a great boon for our clients, because they lend themselves well to gradual introductions.) In all of this process of introducing swimming, it is the staff member who is taking the lead, even if we are moving at the pace set by the client. At all stages throughout this introduction, there would be much physical support, and it is obvious that the swimming will take on no meaning until the deafblind person is actually in the water for the first time. Right, let's adopt these three basic approaches and apply them to Sex education. In theory, it is easy to do. Sex s a fundamental activity that millions of people all over the world regularly engage in, just as often as swimming. If we view it simply as another activity to offer our clients, then we should be able to chart out a series of lesson plans using our three broad principles.

So, our three principles would say: We should look for new opportunities for our clients, new experiences, new activities and we should actively introduce them to our clients - sex is after all just another activity.

We need to deliver the required information and education in a real-life setting. Presentation to Conference: Sex Learning should be experiential.

Where a client has significant sensory impairments and cannot access information through their vision or hearing we may need to adopt a "hands-on method of teaching, using physical prompts where necessary.

So how simple a task is it to adopt those strategies for the teaching of Sex Education? No doubt many of you are now squirming in your seats, and alarm bells are ringing in the heads of those people who are jumping ahead in their thinking and surveying all the possible issues and difficulties?

If we simply consider again, the three broad approaches: How can we make sure that our clients are aware of sex as a possible activity for them? (And how can we then get avoid or indeed foster the debate that exists between sex education and sex training?)

If we wish to deliver sex education, then that has to be meaningful and has to be delivered in a real-life context? Are we seriously saying that we would need to actively introduce sex as part of our curriculum?

For those clients who are deafblind are we seriously considering the option of a "hands-on" physical intervention teaching methodology? (Here it is interesting to note that Sense Scotland were involved in a Working Party set up by Strathclyde Regional Council to consider policy statements in relation to Sex Education for Adults with Learning Disabilities. This working party agreed that for some clients a "hand-on" teaching strategy may have to be adopted).
It is obvious that it is not straightforward to simply adopt our three broad strategies for the delivery of sex education This would result in an approach that would be unacceptable - and indeed nigh on impossible to deliver.

So where does that leave us? And to return to the title of this talk, where are the opportunities and barriers for deafblind people?

Well, let's for the moment steer away from controversy and look at some of the successful educational opportunities that Sense Scotland has delivered. I will not go into great detail here, because much of the material that we use is readily available on the market, and indeed much of it will be covered by other Workshop Presenters today. However, I do want to say something about the processes used by Sense Scotland, with particular reference to the work done with staff teams to make them comfortable and give them skills in delivering sex education.

The work I will now describe is currently being done with one of our Community Houses, where a small group of deafblind adults live, ranging from 18 to 34 years old. The needs of the clients are spread across a wide spectrum, but some of the clients have useful functional vision.

About six months ago the staff team worked together for two days, exploring a number of issues in very general terms and reaching some sort of consensus about the broad approach they would take as a staff team. This was conducted as a training workshop using material developed by BlLD and Barnardo's. The material, Sexual Health Education for Young People, needed to be adapted in some places, but by and large it proved to be a worthwhile two days. We were attempting with this staff team to view sex education within the context of Personal and Social Development, and to link much of the work that might be done with their clients, to our on-going curriculum.

By the end of the two days we had achieved much of what we set out to do and came up with a number of agreements: Pen pictures of all clients, highlighting the main issues that needed to be addressed. (This was an interesting exercise, because at the outset of the two days staff identified some of the main client issues as the non-availability of relationships and frustrations caused as a result of this. By the end of the two days it was clear that the principal issues revolved around: body awareness, self-image, self-esteem, working alongside others, making friends, understanding your role in the world, becoming knowledgeable about menstruation etc. "Inappropriate masturbation" was raised as an issue for one young woman, but this apart, physical sexual acts appeared well down the list of priority issues.

Processes for delivering Personal and Social Development education and I will now briefly outline the main stages that were identified.

Small groups of staff within the staff team would draw up any plans and programmes. In accordance with our standard procedures, where clients are able to join this on-going discussion, then that would be encouraged.

These plans and programmes would be agreed with the Manager of the Community House, and through her with the Depute Principal Officer.

The broad direction of the work to be done would be discussed and agreed at a client's Review which would involve families and Care Managers. (I should stress that it is only the broad direction that would be explained, because we felt strongly that some work that might be done with a client should not be shared within the context of a review meeting. We would highlight material that we would be using and explain in general terms how this would be introduced to the client).

At least two staff would be identified to carry out any activities and they would provide regular reports to the House Manager. These reports again would not necessarily be available for a wide readership.

Plans and programmes would be updated as necessary and again agreed through the House Manager and the Depute Principal Officer. (This process allows work to be undertaken with clients, guarantees a degree of confidentiality, but at the same time allows staff to be feel supported and accountable).

Priorities for each client and establishment of first groups to take this work forward. (Reviews were being held 6 weeks later and so this gave time to draw up the first set of activities).

Firm agreement that any work would be done within the context of Personal and Social Development and would stress where possible the emotional aspects of learning as well as the physical.

Some of the issues that were agreed to be taken forward included the following: For one client we work through Ann Craft's "Living Your Life" which covers basic topics such as: The Physical Self Emotions Relationships Socio-sexual Skills Choices and Consequences Personal Health and Safety. We are using this pack, and making some adaptations as we go along. It comes with a set of worksheets and line drawings, most of which are useful to this client because she has good functional vision. In addition we supplement this material with Craft and Dixon's "Picture Yourself". We give over a specific time each week to following through this course, but equally there is some work that is done throughout the week as situations arise.

One client needs to increase his self-esteem and to know how he can develop relationships. This is any type of relationship. Over the years he appears to have grown fond of people, only to then dismiss them when they cannot solve his "problems". He invests an enormous amount of energy in staff when they first begin to work with him. He hopes that they will teach him how to play the guitar, how to drive a car, make it OK for him to get married to someone one day. The work we are now doing with him is to teach him about the skills he does have (he recently won a National Art Competition), to make him aware that his sensory impairments will be part of him forever, to give him skills to integrate more successfully with the Deaf Community, and through this to develop more friendships.

Another client is generally well settled in her life and for the most part prefers to lead an insular lifestyle. However, she has a self-image which places her around seven years old, despite the fact that she is almost thirty. In many situations this is not an issue, but her general level of independence and the fact that she gets out and about frequently, means that she could be vulnerable to the attentions of others, particularly in such settings as swimming pools. She has some behaviours which could give some people incorrect messages. So with her, we are doing some work on self-image, linked to a life story book. We are also doing some work on public and private places.

So there are opportunities for learning and Sense has used many of these. But perhaps you are a client with not enough functional vision to access the standard material that is available. Perhaps you do not have good comprehension skills. Perhaps you cannot work in the abstract, so objects mean nothing unless used in the right context.

So where are the barriers for such a client? If you are one of the clients who use our services and you have no useful vision or hearing. You have a confused picture of what the world is all about. You've spent twenty years in a hospital ward and you've not had a great deal of opportunity to learn about the world. Communication is difficult for you and in the main you are quite passive. You have learned that your body can provide some fascinating sensory experiences and so for much of the day, you'd prefer to be left on your own, so that you can engage in self-stimulatory behaviours. Sometimes you regurgitate your food; sometimes you anal-pick and rub it into your body - and that's actually quite fun, because usually somebody will come along and give you a nice warm bath afterwards. Sometimes you decide to masturbate, and before long, someone has come along and taken your hand out of your trousers. Every time you try to put your hand back into your trousers, they always take it away. Or else, they make you go through to your room, but what do you want to go there for, it's not bedtime.

And in that short story, there lies a huge number of issues that are repeated daily in residential and day centres the length and breadth of Scotland. Let's concentrate for a few minutes, solely on masturbation, because it is a crucial issue for many of our deafblind clients, and more importantly for ourselves and many of our staff. Let's look at some of the issues (and this would not be an exhaustive list): A client begins to masturbate in the kitchen. You intervene, prevent him from continuing and remove him to his room. Now, you understand all of your motives for every step you have just taken. It's not socially acceptable to masturbate in public place, so I'll remove to his room. I'll leave him for twenty minutes and he can carry on. Makes perfect sense, and we've just delivered two useful pieces of learning. We're teaching him that it is OK to masturbate and we're also teaching him something about public and private places - it's in every text book on sex education!

Let's now look at it from the client's perspective. You're sitting in a room. Nobody is with you, there hasn't been anybody with you for the last twenty minutes. You cannot see or hear anything. You are in a private world. It's still a while to go until lunch, you've got no food to regurgitate, so you think what else can you do . you decide to masturbate . it's fun and it's gives you a nice feeling. You begin and within seconds, somebody has come over and taken your hand away. Now, this didn't happen yesterday, or the day before. You managed to masturbate for 10 minutes and nobody disturbed you. And you were sitting in exactly the same seat. You just don't understand. Now you're being dragged off to your room and made to sit on your bed. This is crazy. You've not had lunch yet, or your swimming trip. What are you going to bed for? You do know that every time you punch your head, they bring you through here until you stop. So maybe this is the same. So, you'd better stop doing that thing you were just doing. Pity you were enjoying yourself. So you sit there for twenty minutes, until the staff member comes back through and signs to you: "Are you finished?" Finished what? You've been sitting here for 20 minutes doing absolutely nothing.

Now, obviously that is exaggerated on all counts - or is it? What would the answer be?

Well, of course we do have responsibilities to discourage our clients from masturbating in public places, so taking a client to a private room is acceptable. The learning that this client needs is to become aware that if you want to masturbate you should always go to your room. How do we teach this?

I should be honest and say that the theoretical model that I will explain now has not yet been adopted by Sense Scotland because there are still many points which have to be clarified and many discussions which still need to take place.

If this were a sighted, hearing person with no learning disability we would interrupt the masturbation in the kitchen by saying: "You shouldn't do that here, but it would be OK for you to do it in the privacy of your own room any time you want". That's it. Over, in a few seconds. You've done your teaching. He will have done his learning. The same basic principles apply for a deafblind client. We wish to tell him exactly the same message. We can't use pictures, we can t use objects (except, perhaps, to tell him to go to his room). Once in his room, we would probably require some sort of physical prompt to communicate to him, that it is OK to masturbate in his room. What form would this physical prompt take? How much physical assistance should we give? Should our physical intervention be reactive or pro-active. That is to say, should we wait until it is an issue, before we introduce clients to the ideas that it is OK to masturbate in your bedroom, or should we teach them as a matter of course.

So far, this particular section of this talk has only raised a great number of questions, and I will continue by raising a few more: If, as an organisation we agreed that it would be acceptable and legal to use some physical prompts to teach masturbation, what would the ethical and moral issues be?

If we then debated those and clarified our thinking as a staff team and agreed in theory that we would allow physical prompts to be used, what would the practical implications be?

Who would carry out such programmes? Would it only be certain people at certain times, which then leads down the path of being pro-active rather than reactive. For example, if a client attempts to masturbate in the kitchen and I encourage him to go to his room, but I am not part of the team which is teaching him how to masturbate, then I will simply leave and possibly add to his confusion. am not reacting to that given situation, which as we all know is when people learn best - when things are happening right there and then. How would we monitor and supervise such work, without being intrusive? How would we choose which staff members should be involved? What do we do if the best staff to carry out such programmes with an individual client feel incredibly uncomfortable in doing so?

If we got as far as clarifying all of the above questions and the thousand others which would follow on there leaves one difficult issue. The staff member may be acutely aware that the physical intervention they are giving at any one time is done in the context of a teaching situation. But does the deafblind person appreciate this difference? Or do they see this physical intervention in the context of a relationship?

We have looked at only one issue: masturbation. In itself it raises a huge number of unanswered questions. If we then looked at any other physical sexual acts, perhaps involving two people, then you can begin to see the complexities of the situation and the hundreds of ethical and moral issues that are present. How do you teach a deafblind person, that it is possible to have sexual intercourse with another person. How do you teach them the steps and stages they will have to follow? How do you teach them the consequences of their actions? How do you teach them about safe sex? How do you demonstrate how to put on a condom?

All of these are physical skills, which are teachable if we adopt and adapt tried and tested techniques for teaching other skills. However, we have not even begun in this talk to explore any emotional aspects: making and breaking relationships, interdependence, feelings etc. Almost all sex education curricula will inform about physical acts within the context of Personal and Social Development. Emotional issues will be to the fore. This is fraught with dangers and difficulties for deafblind people. We should tread carefully when we begin to attach emotional labels to physical behaviours which our clients demonstrate For example, if I approach a client and sign to him "Do you want to come for a walk to the Park?" He begins to punch his head. What is he telling me?

a) I don't like going to the Park;
b) I don't like going to the Park with you;
c) I don't like you;
d) I've got a really sore head this morning;
e) I just want some piece and quiet;
f) I got a fright when you approached me;
g) I feel totally fed up this morning.

These are just a small selection of the hundreds of possible things that the client is communicating. Our working methods at Sense would allow us to build up a picture of what a client is communicating, but only after many observations and after many trials and errors. Sexuality, relationships - they create complex emotional mixes. Could we be certain at present that we have the communication skills to really understand exactly what is going through the minds of some of our clients? The answer has to be "No". And so for some of our clients we are not yet fully addressing all of their needs, because we have not finished our deliberations - our discussions - our soul-searching.

So will we get there? And what steps is Sense Scotland taking to reach the point when we honestly say we are meeting the needs of all of our clients?

There are a number of areas that will progress over the next six months, each of which should result in a better overall service for our clients. We have an already established Curriculum Working Group, which at present is writing a fully detailed curriculum outlining all of the work that will be delivered to clients. Part of this group's remit is to consider the Personal and Social Development section of the curriculum. This will provide much more detail of the work we will carry out, and will consider a wide range of support material that is available on the market. We will also consider writing our own material where we consider there to be gaps.

The Curriculum Working Group will then look at the needs of all clients and how we might deliver all our agreed work. Where it comes up against significant barriers to the delivery of any activities, it will consider solutions. On its own the Curriculum Working Group cannot put these solutions into practice, but it will make a report to the Senior Management Group. (It is worth noting that the CWG is principally made up of direct practitioners, each of whom are regularly involved in many of the issues that have been described earlier).

The Senior Management Group will take an overall view, after recommendations are made by the staff teams. The end result of their deliberations should be an agreed way forward, which tackles head-on many of the barriers that have been discussed today.

It would be fair to say that we are still some way short of having a fully developed package which addresses the needs of all clients. The work involved in writing this talk today, both by myself and other colleagues, has allowed us to be clearer in our current thinking and has given some definite directions that we need to explore. In conclusion, I would like to say that within Sense we are: - attempting to foster an atmosphere which encourages self-expression and leads to new learning - placing any of our work in Sex Education within the framework of Personal Development - considering the central role that communication plays in this work - making sure that any of our interventions are on a planned individual basis. We must be convinced that any intervention is in the client's best interest and that we take the least invasive steps.

Finally, Sense is only too aware that we are only at the early stages of a long and winding road. We have no wish to travel this by ourselves and therefore would welcome any joint initiatives or ventures with any organisations tacking similar issues.

Paul Hart