You may have seen from my recent post Ode to a field, that I have been trying to defend a Skylark and its habitat. They have been seasonally nesting in the field behind our home for decades. For how much longer remains to be seen. The excavator has been busy at the back fence
I couldn’t just helplessly watch from the window. Sobbing.
So in time honoured fashion, I have become an activist. Of sorts.
WHAT IS AN ACTIVIST?
- a person who campaigns to bring about political or social change.”
- activists have been calling for change”
From my activist perspective I can’t – camp in a tree or tie myself to one; camp in a field or tie myself to fence or railing; go on a protest or organise a march to raise my concerns. How much longer anyone can freely do the latter in the UK remains in question. I could fly a flag from my wheelchair or mobility scooter, but I don’t get out much! But I can send emails, ask direct questions, do some research (not endlessly) and post information discovered.
So my activism takes that form.
Suffice to say, I have become a bit of a thorn in the side of our local planning department. Well, I like to think so. Having recently plucked up the courage to make a Freedom of Information request. It has changed the tone of some responses, but not all sadly. Seeing a UN World Environment Day article #GenerationRestoration citing that we ‘the global we‘ have ten years to turn around habitat biodiversity, focuses the mind some what. And it really is amazing what can be achieved from counterpane central.
I have also gathered the courage to set up a Facebook page on the subject and reach out to and contact local people. On learning that I couldn’t inspect a footpath myself, the local Ramblers offered to go and do it for me. How amazing. They have never met me, but reached out to help. That meant a great deal as I have and continue to experience many obstacles. But us CI folk, we’re used to that! I have however also been on the receiving end of online bullying. Not pleasant, and subsequently blocked.
AM I BRAVE ENOUGH?
Raising an issue you feel passionate about can feel very lonely. But it is worth it, if only for the sense that you are trying to make a difference. You will gather some support along the way. Not always from where you might expect or from where promised. But you may not. So it’s something you need to be prepared for. I have had a few weird interactions which have left me disappointed and to be honest slightly disillusioned. And absolute silence from others. Totally bizarre. I am learning not to count on anything or anyone. Sad I know. But that is, as I am sure so many people already know is often how life works.
As some form of help (and as a kind of catharsis) and from what I have gleaned so far. I have listed a few thoughts to keep in mind before you proceed to dive headlong into that issue that is really eating away at you.
to keep in mind
- How much energy can you realistically give to your cause?
- Do you have local support or support from an online community?
- Are you passionate about the cause, or is it on someone else’s passion?
- Identify your end goal.
- How will it affect you emotionally if the goal is not achieved?
- You will be fobbed off. Take a step back and a break, then go back to it.
- Some people might be rude to you. But what they don’t know is what you have already dealt with in life. Remain gracious, be firm, lick your wounds, put your armour on and persevere.
- How long do you think you can sustain the necessary interaction?
- And can you discipline yourself to pace the energy you are allocating to your cause?
- Don’t use energy to detriment of your general wellbeing and management of your condition.
And there is more
- Will people involved understand your limitations?
- Will you be able to say no, if you are asked to do something you cannot manage?
- Will you be able to set parameters with other people, and assert what works for you and what does not?
- Work out, as you would with any other part of life, what you can sustain when your condition is stable and when you’re in relapse.
- Don’t try to do everything for everyone. You will need to delegate. Even if that is directing a person to an information source, to save you looking it up for them. Not everyone will understand how difficult it is doing this with a chronic illness.
- You don’t have to share every detail you have spent precious time searching out. You may be asked, but I am learning that sadly not everyone’s agenda will be as open and straightforward as yours. Trust and discernment play a part. Again, I guess we in the CI community should already be used to that. But generally it’s case of having to answer every detail when CI related. In this situation it’s different. It took me a while to make the distinction. Strange though that might sound. It does add to the mental fatigue sadly.
- Learn to respect your health before any other demand. That is paramount.
- Ask for help and support, which works for you. I have been astonished at the response that I have had from my local MP and their Case Worker (bit of an odd title I know) at The House of Commons. Incredibly helpful. I think or hope they really get that I am trying to achieve change on a health shoe string! Being sent useful links via Central Government which should be freely offered by your local council is surprising to say the least.
- Make sure you take a break. Whether that is for a few days, a day, a weekend or a week or longer. As the adage goes ‘You can’t pour from an empty cup‘. Well, I tend to pour from a jug, but you get my meaning. Don’t go into energy red because of it. I have done several times. And that just means that I am less effective, can’t remember what it was I was going to do and don’t want to because I feel so grim.
- Be careful not to be side-tracked. This happened to me during a phone call early in the process. I make few as they are brain burners. But this one took the biscuit. I have learned. Stick to your script and if you are diverted, bring it back to the focus. Fogging will happen, but you can shine a tractor beam through it.
KNOW WHEN TO STOP AND Do take care of yourself
These are all thoughts I am beginning to need to ask myself. As even with the miserable limitations of severe MEcfs, I can all too quickly attempt to revert back to the personality type that contributed my severe decline in health.
A starter/finisher/perfectionist/doer/people pleaser/yes person with poor boundaries!
But one thing some may not take into account is the ability to persevere by a person with a chronic illness through incredibly difficult scenarios. We all learn to do that day in day out. Pursuing a cause is no different.
be aware of self care
I will say, however, that I recently managed to summon the clarity and self care to decline the offer of a phone call, which would most certainly have caused a dangerous downward cognitive spiral, resulting in another awful and prolonged relapse. I am sorry, but it just wasn’t worth it.
I had agreed to one phone call which was pleasant, with a person with empathy, understanding and interest. It was demanding as it involved many questions and talking about MEcfs and myself. Which I don’t like doing very much, or at all. And meant that I couldn’t get back upstairs for about 5 hours afterwards. Along with a week of PEM. But hey, hopefully it will be fruitful in helping raise awareness at least.
Here is said article. It was initiated by extended family and due to it containing personal detail about MEcfs, I was bullied, twice online in one day! I made a mental note for the future to not engage. Another day wiped out because of people not liking your attempts to save the environment they will inherit. Or will they. Ah well, you can’t please everyone. For those that couldn’t care less there’s always the Internet for regular updates to view on species extinction!
The assumption of some that I am against new homes is incorrect, I am arguing for nature and for there to be balance and consideration given. Especially during nesting season. I am trying to ascertain if loopholes can be reconsidered and changed. The subject of Planning is all a bit of a melting pot at the moment. Which still leaves so many young people with a lack of choice or options.
I also recently learned that there are currently over 600,000 vacant homes in the UK. Along with numerous brown field sites awaiting redevelopment. Something must change. You can read more about Empty Homes in the UK here. The Charity Action on Empty Homes works on this difficult issue.
The issue I have been highlighting now features in the Community Planning Alliance Map. They are a grassroots group, campaigning for better balance in development.
Skylarks have had to move from there native habitat of grassland and adopt agricultural farmland. This is now being developed for housing. Leaving an RSPB RED List Bird, ‘protected’ by The Wildlife & Countryside Act 1981 at risk of extinction. They can live for 10 years. Breeding pairs will return to a habitat no longer there. Changes to this act, could now leave other wildlife at greater risk as protection for them is proposed to be removed, minus consultation.
What else should I mention about activism. Be prepared for disappointments. Identify people who will support you through those and thank them for doing it. Alternatively set up a ‘smash the plate’ stall in a safe place and smash a few plates. Because if one thing I have learned is that people can be amazingly apathetic, or have an overly high expectation of what you can bring to the party as an individual. Some very supportive folk, I have never met. But they cheer me on. Which means an incredible amount. Twitter has been amazing. Twitter at its best is superb. People from all over the country retweeting my tweets to try to gain attention from my local council. They know that I will not give up when I have tagged about ten people and a news outlet. And it does work.
One positive that has come from my forays into the world of trying to protect ever declining wildlife and assert the need for accessibility, is that I have for the first time in 17 years been able to use a conventional computer. This is absolutely astonishing. And I am happily writing this post via a combination of same and android. So whooopeee to that!! I still have to take great care, as well as ask for help from my husband. He must love all my questions. But it is fantastic!!
Years of using a smartphone has definitely helped my brain relearn some technology and be less afraid of it.
Being part of the blogging community, emboldens your ability to interact, a skill which can be affected by a decline in health and the complications of that change in health. To slowly build back up from barely being able to speak, read or write is wonderful. But it has taken many years with basically no medical help. I am incredibly grateful to bloggers. You have helped rebuild my confidence. And I’ll be honest, I often feel more comfortable around you, because you’re so good at communicating. It is a breath of fresh air.
At this point, I should say a big thank you to the blogging community. Through the few years of interaction I have had so far. My confidence has grown and my communication skills improved.
So to all you lovely bloggers out there thank you. I couldn’t have got this far without you, or even plucked up the courage to air my concerns with those who have influence to implement change.
Thank you also to the chronic illness community. Many of of whom are also passionate about wildlife and habitat and who have been incredibly supportive on social media. And who enabled some excellent traction on twitter, when tweeting photos live from my bedroom window. The place I spend most of my time. The room, not the window.
I have learned a lot in the past three months.
- Set up an excel.spreedsheet of the vast number of links/articles/organisations you will accumulate and refer to.
- Don’t be afraid to ask twice.
- Don’t be afraid to ask. Period!
So there you have it. A few tips on activism as a chronically ill person. You can’t do it all, or very much, you may not win, but it’s worth a try if you can safely spare the energy. Some twitter peeps I am in contact with who are activists, just dip in and out as they can. But it does help if there is a group you like and feel comfortable with. Just don’t waste your energy trying to change a group which won’t. It will burn out energy you need to share the point you are trying to make, So find your tribe. Not easy. Mine I think is spread across the country. But who knows, perhaps I’ll find a group of people who I really gel with in a comfortable and manageable way. I hope so. Because nature and accessibility are subjects I like to raise.
But again, please be careful and pace yourself. My heart is not happy and yet again I’m laid up in bed. To be honest, that’s where I’ve done the bulk of my campaigning from.
Here’s my little friend the Skylark.
➡️ And their song! ⬅️
Have a blessed day⚘