I recently watched Hera Hussain’s TEDx talk on YouTube about how women are using the Internet to get and give support when they experience violence and domestic abuse. I found it interesting how she described charity websites being designed with other organisations in mind, rather than the women themselves.

After watching it with my sister we talked about the similarities with what happens in chronic illness communities supporting each other online and charity websites.

As someone with a long-term chronic illness herself, she is part of a variety of Facebook groups. Some supportive, some news and some campaigning. Friends she met through a youth charity for people with that illness keep in touch with facebook, instagram, twitter and other methods. They also like to send each other supportive parcels. They can’t fix each other’s illness and some are much more severely ill than others, but they can support and encourage each other in different ways. Celebrating achievements, whether it’s starting an OU course, managing to wash their hair, or making a card and supporting each other through the tough times; like when their health gets worse (sending a postcard if they are struggling to use a computer or phone) or if they suffer a bereavement. The youth charity also has an online forum, but peer-run groups and social media allow them greater freedom in what to say and what they are allowed to do (as the charity works with both under and over 18's, so some rules are related to child protection).

Social media also allows them to speak beyond the immediately affected. People with chronic illnesses are often limited in going out and that can prevent their views being heard. Yet one of my sister’s friends wrote a Facebook post after the election on the likely affects of the governments’ policies towards disabled people and it was shared so many times that she was contacted by a newspaper to turn it into a comment piece.

Whilst charities take sides on possible cures for the illness and different studies are conducted, the community themselves has gotten a stronger voice. Many argue against treatment trials which they are concerned will hurt vulnerable participants. They focus on compassion and mutual support, rather than finding a fix or cure no matter the cost.

Those who are unwell with a chronic illness should be able to know their options and make decisions for themselves. A medical model of disability focuses on scientific tests for fixing things. But as in Hera Hussain’s talk, sometimes things can’t be fixed. The support needed to cope with pain, difficulty and frustration and to get through each day, is not being treated as ‘one size fits all’, or as someone who can’t make their own decisions, but as a person who has the right to know their options, to have support and to feel their life has value.

Currently I am working on a uni assignment exploring health inequalities and I have certainly found some charity websites are designed more for the patient or target group, and others for agencies, charities and the NHS. Sometimes this might make sense, but in regard to transparency and agency there is a common refrain “nothing about us without us” which ought to be considered when making websites and resources, as well as designing policies and research. One concept that is important in doing this is involving experts-by-experience, who are people who have lived experience of the situation of the user group.

Having worked on an asylum seeker blog project I know that creating content with the target group that is also useful for them and used by them isn’t easy (we didn’t!). The content was made by asylum seekers and their supporters, but primarily targeted at local people to break down media myths and stereotypes. However it created an uncomfortable dichotomy whereby we were trying to represent a community, but without many of them reading it and having a opportunity to respond, comment and question – how could we really represent them?

My challenge to charities, NGO’s and other social sector projects is this. If your service users/target group look at your website can they easily find information accessible (language, mobile-friendly etc) and useful for them, which doesn’t baby them or ignore their choices, but clearly informs them. In what ways can you support existing online peer support and work alongside these important services, rather than taking over and how can you integrate users into the site. The whole website should consider the target group, so how do you represent the target group in content aimed at funders, used in fundraising or in reports? Would your target group be comfortable seeing themselves portrayed in this way?