I was planning to write something else, but I am not feeling at all well to be honest. I am not well enough to ensure that what I was going to write about could be done where I wouldn’t be arrested as it is a tricky issue with legal ramifications which related to the UK proscription of a group of political activists declaring them terrorists by stretching the definition of terrorism. Since I am not well, having to deal with that crap in an increasingly undemocratic country required me to make some choices that I wish I didn’t have to make. I am honestly not well enough to put myself into that situation and I have realised that if I don’t take care of myself, no one else is able or willing to do so.
So, instead I am writing about being a disabled activist and living with non-obvious impairments and how social exclusion has marginalised me. I want to begin by thanking my friend Bob Williams-Findlay for the impairment reality phrase as it is very important. Disability is the result of social oppression (disablism is social oppression); my impairment reality relates to coping with diabetes, arthritis and Meniere’s Disease which have forced me to make a whole series of choices to deal with the impact of the impairments while at the same time being a disabled person and the social exclusion that creates.
To make an obvious point, I am a political activist and also a disabled person. My impairments mean that I need coping mechanisms to stay relatively functional. I am also a political activist who works against the oppression that disabled people live with constantly. I do other political work around Palestine, austerity and women’s issues as well, I am a member of a Community Trade union and I organise locally as well.
It is only reasonably recent (the past 7 years) that I have identified as a disabled person. When I think about it, I realise that I am quintessentially a political activist who works on issues around economic and political oppression; that is what I do. It is unpaid labour, but it is my work (speaking of which, we really do need to have a discussion of what work is rather than leaving it defined by a system which demands our ability to labour).
So, this is a version of “the personal is political” … many people recognise that expression from the second wave of feminism (I was a child, but the expression survived the attack on feminism in the mid-late 1970s forwards). It is a realisation that we are not separated from the political at any level; political realities impact our individual personal lives (think of access to birth control, bodily autonomy, or even our primary role in social reproduction) and our individual personal lives shape our politics (our acknowledgement of oppression or injustice and how we think we can deal with it creates different political responses). If you think that it is the capitalist system that is responsible for your oppression, getting rid of the system is an answer – it doesn’t rule out reforms, but the end process of the struggle differs; that is why I am a socialist feminist.
Women’s realisation that they were experiencing similar forms of oppression if they were racialised, if they were working class, if they were LBT+ made people realise that what was happening wasn’t personal. Not the same, but similar — the impact of racialisation, LBT+, disability, and class background impact the oppressions due to intersectionality and historically and experientially there are different impacts. Our oppression is social, it is the way the capital society is structured, sociologically and culturally as this reinforces what the system needs. If the system doesn’t want to pay for childcare and social care and it falls on women, pretending that oppression is natural rather than social is in the interest of the system. We can change social systems, it is much harder changing something that is natural and biological.
When people ask, what do you do … you normally respond about your job, your career, but I don’t have those as I was essentially unemployable due to the conditionality of Meniere’s disease which was the first impairment that I developed which significantly affected by life. Sometimes you are fine, other times you are not and you cannot predict which one you will be. But I am more than a political activist, an economist, etc and we are defined by more than our “job” … we are other things as well, for example, I am a woman, I am disabled, I am Jewish culturally, I am married and I live with my four cats and I love my husband and the cats, I have friends and comrades whom I care deeply for. I also love reading, and my books seem to be breeding as I am running out of space again.
However, since I became unemployable as a paid worker, I have thrown much of my life into fighting against political, economic and social inequality in the hopes of working together with other people to build a future that would be fairer for the overwhelming majority, which preserves the planet and which covers the needs of the majority whose voices will determine what we as a society spent our time producing and protecting.
Being a responsible activist means taking care of you (with support)
I am going to talk about my health rather than political activism for a bit; but honestly, they are not that separate when political activism is your life. As comrades know, I wound up in the hospital for 11 days in early March with a bout of pneumonia and ketosis/acidosis after a 6 day long political conference. I also had flu as well; someone brought it to the conference and infected almost everyone attending. I hadn’t known that until I left the hospital – this happened despite my flu vaccine, my wearing an N95 mask from the 3rd day of the conference onwards, and taking vitamins to prop up my immune system.
I want to discuss this as it is a political question as it is one. Don’t we have any sense of responsibility to others at meetings, conferences or events? Given this was post-Covid and I had masks with me and still got ill; shouldn’t conference organisers have considered using a HEPA filter? I was not the only person who got sick; everyone that went with me came home really ill. There were people with compromised immune systems at this conference. Shouldn’t we take some responsibility? The person who brought the flu to the conference probably didn’t know that they had it; but shouldn’t we protect each other? It is worth the money to protect each other. Have a HEPA filter, have masks available and if you get sick, stay away from everyone else. This is a not only personal choice, it is political issue; it is almost as though we have forgotten how many died from Covid, have long covid or have long-lasting or permanent impairments. We should know better and we need to behave how we want the world to be in the future.
I didn’t know that I had pneumonia either until I woke up at the hospital. I did know that the blood sugar was out of whack probably caused by poor management on my doctors and my part as well as steroids injected in my lower back due to 3 herniated discs. My body loves steroids, and reacts very well to them; especially my blood sugar.
I clearly was having problems managing the diabetes; I probably had ketosis when I left to go to the conference. I was very careful about what I ate; I drank a lot of water and tested my blood sugar at the conference. The reality is that this was the 2nd time I had ketosis which is really not common for someone with type 2 diabetes. Yes, it was stupid, but there was a reason to do it ... when I think about it, it probably was not good enough to justify my going … I treated my life as not important. You never really think that something can happen just by attending a conference.
Let’s be real, I wanted to be at the conference because I wanted to make certain that issues around organising in solidarity with disabled people and ensuring that our organisations were inclusive ones which did not disable our members. I wanted to ensure that people that I worked with recognised that disabled people are oppressed and would fight alongside of us in solidarity. Surely someone else could have done it. It is important, but not worth my life and I need to take better care of myself. People keep on telling me that I need to take care of myself; but then ask me to help organise something, go to a protest, etc and I also don’t think of myself as something beyond a political activist and I am extremely worried at the world we are living in and I have trouble saying no.
Ensuring Inclusion and Solidarity
There is no question of the importance of ensuring solidarity with disabled people, the left needs to do better. We (the left) have done poorly for far too long. Getting organisers of events, meetings and protests to ensure inclusion was a constant struggle: our meetings were held in places where you need to negotiate stairs; sometimes there is no clear way to get to meetings from public transport without stairs, there is no parking for disabled people. Protests did not have shorter routes for disabled people, they were in areas with inaccessible public transport, disabled people representing disabled people’s organisation were not invited to speak. Unless this changed, our great protests against colonialism, racism, police brutality, austerity, political and social oppression, etc just didn’t include disabled people who are oppressed by the capitalist system.
Disabled people are treated as an inconvenience at best, as useless socially, and most dangerously, due to eugenics, as a drain on the society. If we understand disability as social exclusion; then we need to understand our role in this social exclusion. Disability is not about the specific physical impairments or emotional issues or that mental health issues we have. Those are impairments and that impairment reality differs between disabled people.
It is painful to say, but disabled people are being disabled by the left – as an understatement, this is not acceptable. We are opposed to oppression, we support self-organised autonomous movements of the oppressed; we should stand in solidarity, recognise the agency of disabled people and recognise the obvious that disabled people can organise and fight for themselves. The phrase “nothing about us, without us” used by the disabled people’s movement (along with other movements of the oppressed) expresses the agency of the oppressed and our solidarity ensures that they lead their own movement.
The problem is a general one under the capitalist economic system which we on the left should not be reproducing. It is not our bodies, our mental health, our emotion health that are disabled; it is the fact that capitalism requires working class people to provide their ability to labour and not all disabled people can do this.
This is due to the nature of the system and the way in which production occurs: the regimentation of production, the use of technology for the purposes of production of surplus value which must be then realised (through sale) as profits. As such, when the UK Labour government treats disabled people not working as a supply problem (they do not want to work) rather than a demand problem (employers don’t want to hire them because wages of non-disabled people are so low and you need to make reasonable adjustments when you hire disabled people) then you are blaming the victim in this situation. If the UK government wants disabled people to work, they can increase spending in the public sector and hire them; they would be in union jobs with better wages and access to benefits. But no, that is not what they want them to do; they want the private sector to hire disabled people when they may get less “productive” and more expensive workers.
Things change when you develop health problems
Unfortunately, the pneumonia and ketosis/acidosis have causes serious problems for me and while I am breathing better, there are longer lasting issues:
1) My allergies are much more dangerous for me. Previously I had allergic asthma, but it took a lot for asthma to occur. Now, a beautiful garden outside someone’s home can cause a full-blown asthma attack withing seconds; I carry the new steroid inhaler and the emergency inhaler with me at all time. However, I also found out that those wonderful N95 masks that I wore during and after the covid crisis also stop pollen; sneezing is fine, full-blown asthma attacks much less so. Note that I said that my body loves steroids, well my asthma medicine has steroids and I need to take it knowing it will raise my blood sugar. Sometimes our choices are constrained and contradictory and not really choices …
2) I’ve been a diabetic for the past 15 years; I was diagnosed as a type-2 diabetic probably because of my age (I was 50 when initially diagnosed). I’ve had ketosis twice which is why I am actually thin and now acidosis ketosis which forced me onto insulin while in the hospital. The long-acting insulin isn’t enough to stabilise my diabetes; I am now taking both long-acting insulin once a day and 3 injections of rapid-acting insulin with meals and my sugar is still not regulated – it goes up and down all over the place.
My diabetes is now managed at the hospital rather than GP and I need to get my diabetes specialist to ok some tests to make certain that I do not have Latent Auto-Immune Diabetes in Adults (LADA). Honestly, I doubt that my GP and his staff have heard about this which is why they gave me medicine for a type 2 diabetic. Why this diagnosis is important, it actually has no impact on my life and what I need to do to deal with the blood sugar being whacked out, but this is useful for research into diabetes
Anyway, the sensor and new insulin have forced me to hold back from going to protests often. I was afraid how my body would react to the heat, to the stress of a protest, to the anger that so many people (including myself) were feeling. Certainly, if there was walking, it would be great exercise (a plus for keeping blood sugar levels down). But many protests were static ones; meaning standing in the heat and the sun watching the damn phone to see if my blood sugar was fine or going all over the place.
Recently, at the end of June, me and Mr NY Brit Expat were planning on going away for my birthday; it was a big one and I needed a vacation – it’s been very stressful personally (hospital, etc) and politically (attacks on disabled people’s benefits, the genocide in Gaza, the rising attacks on basic civil rights and more stringent policing threatening freedom of expression and protest) in Britain.
We realised that since the diabetes wasn’t stabilised and that I am now wearing a sensor (which had already broken down once) and that I needed to carry insulin with me, needles, blah blah blah, etc … that maybe we should just go somewhere in England in case there was a serious problem with the diabetes and we went to Dorset instead (lovely place, I finally got to see Sequoias at a national park where they have different types of evergreen trees located in the same area) where if there was a problem, I could walk into a hospital. Simples …
Since I was new to the sensor and to taking rapid-acting insulin, I forget to bring an extra sensor with me (I didn’t realise how dependent I am on the damn thing). I didn’t bring my diabetes testing kit either (because I got used to the sensor). I did bring extra needles and insulin as well as my whole drug kit (honestly Felix Unger has nothing on me when travelling).
But I had already made a mistake, the sensor I was wearing got detached. I was talking about just giving up and going home where I had another sensor, but we went to a local pharmacy who were absolutely wonderful and who replaced the sensor that had detached accidentally. I put on the new sensor and then that sensor died after telling me that my blood sugar was really low (if sensors could implode, that one did it: you are at 1.9 mmol and then the swine died) … we went back to the pharmacy again; they kindly replaced that sensor as well. The fact that I was just going to give up (it was ridiculous) was conditioned on the fact that I had very little support since I developed Meniere’s disease; no one told me about what was available for support. I just took care of myself and got on with it; I learned not to expect support. So, doctors provided really good medical care when needed, but years of insufficient investment and cutbacks by successive governments meant that extra information and support wasn’t available from the NHS.
That I got support and assistance surprised me … it was a wonderful birthday present honestly. It reminded me that I was worth taking care of … yes, depression has been a problem as well, my ability to cope with isolation and alienation due to being disabled has been somewhat strained. Too many things going on in the world and in my life and a complete inability to stop these appalling things like genocide happening … these feelings of powerlessness are not helpful when you are not feeling well physically and mentally and you are powerless.
Coping with the situation
When you screw up, you almost expect to be left to your own stupidity. That is nonsense and it is your depression talking and saying crap to undermine you (yes, I do realise that I treat my depression as sentient; it feels like it is … by making it a subject, it becomes easier for me to handle). I realised that I can be actively deal with this latest medical mess and still go on doing my political activism. A bit less heavily, but I can incorporate everything if I just keep an eye on things. Sometimes that doesn’t always work; today I had to miss a birthday celebration of a dear friend who understands the situation and there were lots of other people there.
I have started going to meetings in person again rather than online; I find myself constantly checking my blood sugar while I listen and participate in discussions. It is distracting, I am hoping that it will become a situation where I am checking to see if I can have a portion of potatos (a no-no for me) .
I had to leave an excellent event on Disability and Migration where we were discussing the similarity of policies used against migrants and refugees and disabled people in Britain because my blood sugar climbed really high and it had nothing to do with the really interesting topic we were discussing. It was the heat and sitting throughout the meeting that was responsible.
At the last conference I attended, I started to move around (my hand fan is great exercise and helps with keeping the blood sugar down; which I only found out by accident – it was a learning-by-doing moment). During longer meetings to try to address the blood-sugar level problem, I started walking around the room and moving my arms. Yes, it looks strange when I pretend to start dancing after going to the back of the meeting. But it lets me stay there longer and that is a win-win.
Now I just have to make sure I have access to a bathroom when I need to take my meds; I had to take an insulin injection after I got off a tube or I wouldn’t be able to eat (the train had been delayed) and I literally went into an alley with an alcohol pad to be able to eat lunch … perfection is a fantasy for other people honestly!
