It’s a Bugs Life!

Much of my recent work has been around participation and involvement of families (and people who use social care, health and education services – children and adults) I’m passionate about participation, I honestly see it as the best way forward. Locally (and nationally pre Coalition) there’s been some good stuff happening that I’m proud to be involved in, there’s been a true sense of partnership. However, despite my passion, I’ve always thought there was a fine line between participation and campaigning and recent events have confirmed this in my mind.

The simple fact is that campaigning happens because those with the power to change things stop listening to and stop involving the people that matter. The people that matter then feel they have no option but to campaign. This is exactly what has happened with this Government. They clearly have their agenda and a carefully structured ideology and they have ploughed on regardless, only listening to those who agree with them. Carefully selecting the people to listen to and ignoring those who might disagree. Even worse they then vilify those who disagree, calling them “trouble makers”, “lefties” and cite them as subversive activists. The “playing field”, that was never actually very level becomes more uneven, people feel powerless, backed into a corner and understandably come out fighting and who can blame them?.

I still believe that participation and partnership is the best way forward and produces the best results for everyone but its a two way street and has to be wanted and encouraged from both sides. I still strive for engagement and involvement but If the more powerful side doesn’t want to engage then what do you do? So I also respect those who are forced to campaign. I have the utmost respect and admiration for people like Sue Marsh and Kaliya Franklin and the other’s who wrote the Spartacus Report. Their comments on twitter have reawakened my campaigning spirit and I want to show my support.

I wrote the following piece three years ago, most of it still holds true, except now (thanks to Spartacus) I actually do want to overthrow the grasshoppers (read on, it will make sense I promise!)

It’s a Bug’s Life

When my son G was diagnosed as disabled I found myself, as many other parents do, catapulted into a whole new world. That was 1991 and 17 years on I still remember vividly that feeling of being lost, isolated, frightened for the future and feeling completely powerless. For the first time in my life I knew what it felt like to belong to a minority group and feel discriminated against.

Everything I needed for my other children was available and getting it was straightforward but for G just obtaining the same, never mind the additional support we needed seemed to produce yet another battle. Consequently, it was a relatively short step from an ‘anything for a quiet life’ mum to ‘warrior’ parent.

When G was around twelve I got involved in a parent campaign group in Oxfordshire to try to save the county’s short break centres from closure. As a consequence I became quite well known as a loud and vocal parent, particularly amongst the local councillors who viewed me as a ‘difficult’ parent and a ‘trouble maker’. But I didn’t care. After years of feeling invisible it felt good to have a voice at last. It made me feel empowered for the first time in years.

Since then I’ve learned that getting involved, however exhausting at the time, is well worth the effort. By speaking up about G’s needs and learning the system, I could ensure that as a family, we got what we needed to make his and our lives better. I became better informed and discovered that knowledge is power!

I learned a lot through campaigning. I learned that many voices are better than one lone voice. Alone you might change your own circumstances but you rarely change the system for everyone else. I learned that by standing outside the window throwing stones you might break a bit of glass, but all you get is dismissed, labelled and derided and that actually getting around the table produces the best outcomes for everyone concerned. Instead, by listening and learning from each other you may find you all want the same outcomes and working together is much more powerful and productive for everyone involved.

I am also reminded of a scene in Disney Pixar’s, ‘A Bugs Life’ (forgive me for this rather bizarre analogy, but I am the mum of a young man who loves his DVDs). The ants realised that by standing together they could defeat the grasshoppers. The grasshoppers knew that when or if the ants realised this they would be in trouble and they would lose the control they had over the ants. Now I’m not suggesting for one moment that we overthrow the grasshoppers, but the power of a united group, however small and powerless they felt is the moral of the story here.

As the parent of a disabled child I have often felt like a mere ant in the whole spectrum of things, fairly strong as an individual for my size, but a bit lost on my own at times.

So more than anything over the years I have learned, just like Flick, the ant from ‘A Bugs Life’, that there is strength in numbers and that by working together as a united group you can and will make a difference for everybody.

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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