Femke Krijger from Holland compares her life to balancing on a tightrope and believes that deafblind people can take great pride in the courage and skill they show in walking the high wire.

When you are deafblind ( congenital or acquired) you face enormous difficulties in coping with normal life. You have to overcome serious barriers in communicating with the outside world, and you are not as mobile or free as you would like. Every single activity, no matter how simple or complex, requires huge concentration, and in all of this you have to use your energy carefully.

Being deafblind is like being a tightrope walker, balancing concentration and relaxation, courage and fear, trying and letting go, independence and dependence. There is a tightrope, you might say, stretched out over our everyday lives.

For those of you who are not deafblind, think about your morning routine: you take a shower, get dressed, maybe drink a cup of coffee. After breakfast you go to your car or the station, travel to work, have another cup of coffee, chat with your colleagues and turn on your computer.

Now, imagine doing all these things walking on a tightrope, which is my morning experience. Walking from your bed to the shower, taking a shower, imagine how difficult this would be. Drying yourself, walking from the bathroom to your closet to the kitchen – all the time on an unsteady tightrope.

To some people this image might seem strange. But for deafblind people it symbolises the restricted freedom of movement and activity we are confronted with every day. But it isn’t just about restrictions, it also symbolises the strength and skills shown by deafblind people as well. The tightrope expresses the tremendous impact of living life with deafblindness.

The physical and mental level

A balancing artist needs to balance his speed, weight and strength – just as a deafblind person does. For example, the faster I move, the more concentration I need to look out for what is around me, so that I can react in time. This causes me physical tension which costs a lot of energy and stress that cannot be endured for a long time.

Knowing the source of the physical tension helps me to better accept the importance of balancing my speed. And, beyond understanding and accepting, I start looking for the least stressful way of undertaking activities. If we go out by car on a family trip, for example, we now have a rule that the kids do not talk to me, but to their father during the drive.

As a balancing artist, I also need to be aware of, and look after, my body but this is difficult. My senses are overburdened, while my physical strength is neglected. This leads to a disturbing body awareness which is disastrous for any balancing artist - the deafblind in particular. I was often in tears pleading my husband to hold me so that I could literally feel my body again and regain the sense of being present. For two years now I have had massages every few weeks which help me to maintain a healthy body awareness. However, my physical body still longs for some more physical effort, but energy is too often lacking.

Finally, the need to balance strength also relates to need to make choices. Everyone is forced to make choices, but for deafblind people this is a daily challenge. When I started to understand that this was one of the skills I needed to develop as a balancing artist, it became something powerful I was mastering - instead of feeling like a restricted handicapped person once again. It began to strengthen my self-esteem instead of undermining it, and people around me responded to this strength.

The psychological level

Living with deafblindness demands courage, flexibility and endurance. These are exactly the same qualities needed by the balancing artist walking the tightrope. It takes courage to step out onto the high wire. When doing activities leads to confrontations with the physical limitations caused by deafblindness, the tightrope begins to wobble. This requires flexibility, and when this is used up, endurance is required.

It is the small things that often require courage: doing the shopping in rainy, dark autumn; going to the play garden with my rebellious three year old; cooking at the end of a tiring day. Often living at the edge is the price I pay for participating fully in life, being a partner, mother, friend and volunteer.

And while I often need courage to start any activity it is flexibility that helps me through. Go with the flow, as they say. This means: getting very wet in the autumn rain because I cannot walk any faster; accepting a paid student joining us at the play garden so that I can guarantee the safety of my youngest; cooking nice, but easy food. And sometimes I just have to accept that I cannot participate the way I want to, and have to endure this - like at a birthday party.

In short, the tightrope metaphor can strengthen our self-esteem. Seeing yourself as a fabulous balancing artist feels very different from presenting yourself as severely handicapped. It can help deafblind people to find their own strength and use it.

Of course not everyone will be the best balancing artist ever. Some people are better at balancing than others, some will do a handstand on the wire, while others will move forward slowly, never feeling completely at ease. But this doesn’t alter the fact that every deafblind person is, by definition, a balancing artist – and can take pride in this. Our challenge is to get better at this over the years – and for professionals to support and encourage us as we step out along the wire.