"You have to become active yourself as someone affected"

• Christoph Küsell, who has been working at Commerzbank for many years, has been volunteering since 2012 for people with the muscular disease FSHD.
• As a contact person for the German Society for Muscular Diseases (DGM) and member of the FSHD working group, he supports those affected with diagnostics, aids and dealing with public authorities.
• His own experience as someone affected and his analytical way of working from the bank help him to give others orientation and to at least partially close systematic gaps.

Christoph, how did you come to your voluntary work?

In 2011, I realised that the muscular disease FSHD in Germany is basically only being administered. There was hardly any serious research taking place. As someone affected, that was particularly frustrating. You notice very clearly how much this disease restricts you in everyday life – and at the same time almost nothing is happening on the research side.

Through an article in "Science Express", I became aware of researchers in the Netherlands and the USA who had deciphered the mechanism of FSHD in 2010. Among the researchers was Professor Stephen Tapscott with his laboratory in Seattle at the Fred Hutchinson Cancer Center. The insights I have been gathering from my contact there since then, I pass on to the networks in Germany. That is how my voluntary engagement gradually developed.

What exactly do you do in your voluntary role today?

I am a contact person in the DGM and additionally active in the FSHD working group. In this role, I primarily support people with a similar diagnosis, preferably FSHD, but also people with other muscular diseases. It is often about questions on diagnosis and recommendations for specialised muscle centres that can carry out further examinations. I advise on possible aids, potential cost bearers and – if necessary – also on legal remedies. It is often a mixture of professional guidance, personal exchange and very practical support in everyday life.

How much time do you invest in your voluntary work each week?

On average, it is three to four hours per week. With every application and every enquiry, you become a bit more knowledgeable. You learn with each case – in terms of content, but also in dealing with public authorities, offices and other bodies. From my point of view, my role is more of a necessity. As someone affected, I experience that many offices and contact points only partially fulfil their responsibilities towards people with restricted mobility. One example is the question of who pays for disability related structural modifications. Depending on professional or private requirements, there can be several possible contact points involved in Germany.

You quickly realise: if you only put in a little effort and fail to follow things through, absolutely nothing happens. That applies to your own situation just as much as to other people affected. This experience – combined with my own disease – motivated me to take responsibility and become active with a network instead of waiting.

What positive experiences have you had in your voluntary work?

I experience a great deal of gratitude. When you can provide concrete help, for example with access to an aid or with clarifying funding commitments, you can directly feel how relieved the people affected are. It is also positive that I can raise awareness – both in my personal environment and in institutions. Sometimes even the bank benefits, when it is a matter of finding, for example, structural solutions for those affected and avoiding costs. One example of this is the good cooperation with the Integration Office, which is responsible, among other things, for ensuring the occupational participation of people with disabilities and coordinating appropriate support services.

What challenges do you encounter?

The greatest challenge is to identify the needs of those affected precisely. What really helps them? A good starting point is always the question about the reason for getting in touch. You have to identify fears, take stock of the situation and build trust.

At the same time, the mass of potential support options is huge. It is not easy to filter out the appropriate support for each individual. To do this, you need a network in which you can access relevant information without many detours. In terms of scope, it is actually something for a full time position.

What can you take from your voluntary work into your work at the bank?

I see how other organisations deal with similar challenges. The Integration Office in Germany, for example, can play an important role when it comes to finding solutions for employees – including at the bank. In addition, my voluntary work sharpens my view for individual situations and needs. That helps me in my daily work in the risk and compliance environment, because there too I have to look very closely and proceed in a very structured way. My professional analytical approach is beneficial here: categorising information, examining options, setting priorities and then planning the next steps together with the people affected.

Do you believe that volunteering strengthens democracy?

Volunteering can contribute to this, because you are there for others and experience social cohesion in a very concrete way. At the same time, volunteering should not be seen as the sole “saviour”. Volunteering can close gaps, but it cannot replace the responsibility of state institutions. Therefore, I can encourage other people to become active when they perceive a need somewhere. You cannot correct everything on your own. But you can provide closeness, orientation and support. That makes a big difference for the individual person.

What do you wish for with regard to your voluntary work?

If you already take on a voluntary role, then I would wish for more recognition, appreciation and also more rights in its implementation. Many volunteers achieve a great deal, often in the background. It would be good if that were to become even more visible.

Thank you very much for the insight into your engagement, Christoph.