Coronavirus: How self-help groups and associations keep running in times of pandemic

Dr. Danner, how does the coronavirus crisis impact people with disabilities and/or chronic illnesses?

Dr. Martin Danner: One thing we should keep in mind is that many people with disabilities and chronic illnesses are considered a high-risk group for coronavirus disease (COVID-19) and are at an increased risk of infection or severe illness. Restrictions, social distancing guidelines and precautions eliminate most options to foster personal growth and engage in social interactions. This pertains to both face-to-face interactions that were an essential part of the pre-pandemic self-help group setting, and contact with family members. Isolation and social exclusion continue to be key issues in this crisis.

School-aged children also find themselves in a unique situation. It is wonderful that schools are reopening, but it forces students with chronic illnesses and their family members to make a tough decision: Should they take the risk of attending in-person instruction or stay home from school and miss out on access to education? As a general rule, students should have the same homeschooling accommodations and opportunities they received when school remained closed during the previous shutdown. However, it’s apparent that their needs are quickly falling by the wayside.

How are people with disabilities being taken into account in the current coronavirus discourse?

Dr. Danner: Right now there is lots of talk about loosening restrictions in most areas but hardly any mention of high-risk groups. Having said that, the pandemic has brought discrimination and social exclusion to the fore but from a different perspective. People who never had to deal with social exclusion before – one example of this is residents quarantined in Gütersloh, Germany, after a drastic coronavirus outbreak – suddenly experienced what it is like not to be welcome in certain vacation destinations. The coronavirus crisis has increased social awareness for specific topics. Now it’s up to people with disabilities to call attention to the fact that they are actually always affected by the problems of containment measures, ostracism, and social exclusion, regardless of the ongoing pandemic. It is my hope that this will prompt a learning effect and sustained awareness in society.

How has the coronavirus pandemic affected the way your Association works?

Dr. Danner: To some extent, the work in the self-help groups has ground to a halt because members could not meet. Of course, groups switched to virtual meetings wherever possible. In-person support through live services has been replaced by other communication resources such as phone or video consultations. We saw big changes in terms of communication structures within a very short time.

Aside from that, many associations ran into difficulties because they had to cancel events due to the coronavirus crisis and were unable to carry out projects as planned. This prompted financial questions: Who pays for event cancellation costs for conference venues and meeting facilities? What happens to the funding of projects that cannot be implemented?

The crisis also affected the work of associations: Generally, an association is required under its bylaws to hold meetings of its members and board members. Yet this wasn’t an option in most instances. That is why the German legislature has also reflected this in its new pandemic legislation, allowing relaxation of association rules. This means associations can forego in-person events pending further notice. That being said, it is obviously difficult to keep association business running without the usual committee meetings.

Is online communication a viable alternative to traditional forms of communication in self-help settings?

Dr. Danner: Self-help and support groups have seen many changes over the years. Especially the younger generation believe traditional group meetings in community centers are no longer a relevant and modern way to interact. They prefer more innovative methods of communicating such as social media. In a way, the pandemic has acted as a catalyst for change and has given a big push to modernization because traditional self-help was no longer an option and there was enormous pressure to innovate.

In the long run, online communication is obviously a viable alternative. However, we also noticed that this prompts a certain lack of closeness and intimacy within the group. Understandably, a video meeting doesn’t support the same feeling of belonging as an in-person group meeting or a shared leisure activity. That’s why virtual communication will certainly never fully replace the classic forms of peer support and self-help interactions.