Originally posted >> dailykos

I was planning to write something else, but I am not feeling at all well to be honest, not well enough to be sure that I wouldn’t be arrested because of legal ramifications in the UK over proscription of a group of political activists as terrorists, a stretched definition of terrorism. Dealing with that undemocratic crap was a choice I didn’t want to make. I am not well enough, and realised that if I don’t take care of myself, no one else will do so. 

So, instead I am writing as a disabled activist, living with non-obvious, invisible, impairments, describing 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, or disablism; my reality is coping with diabetes, arthritis and Meniere’s Disease that forces me to deal with the impact at the same time of being a disabled person and the social exclusion that it creates.

To make an obvious point, I am a political activist as well as a disabled person. This requires coping mechanisms to stay relatively functional. I work against the oppression that disabled people live with constantly, plus other political work around Palestine, austerity and women’s issues. I am a member of a Community Trade union and organise locally as well.

It is only recently in the past 7 years that I have accepted my identity as a disabled person. I realised that I am a political activist working on issues around economic and political oppression, which is unpaid labour. We really need to have a proper discussion about what work is, and not leave the definition to a system that demands the ability to labour.

What I am saying is that “the personal is political” … many people remember that expression from the second wave of feminism as it survived right through mid-late 1970s. It is a realisation that political realities impact our individual personal lives, birth control, bodily autonomy, or even our primary role in social reproduction. Our individual personal lives shape our politics, and our acknowledgement of oppression or injustice. How we think we can deal with it will create different political responses. If you think that it is the capitalist system that is responsible, getting rid of it is an answer – it doesn’t rule out reforms, but the end process of the struggle differs; which is why I am a socialist feminist.

Women’s realisation that they were experiencing similar forms of oppression if they were racialised, working class, LBT+ , made people realise that what was happening wasn’t personal, but similar — the impact of racialisation, LBT+, disability, and class background impact the oppressions differently due to intersectionality, both historically and experientially. Our oppression is social, as capitalist society is structured, to reinforce its system by culture and social methods. If the cost of childcare and social care  falls on women, pretending that this oppression is natural rather than social is in the interest of the system. Social systems can be changed, natural and biological systems are much harder.

When people ask, what do you do … you normally respond about your job, your career, but I was essentially unemployable due to Meniere’s Disease which was the first impairment that I developed which significantly affected my life. At times you are fine, at times you are not, and they are not predictable.  But I am more than a political activist or an economist, and people are more than their job. I am a woman, disabled, Jewish by culture, married and have 4 cats. Those cats, my husband, my friends and comrades I care for deeply. 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 our 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 now going to talk about my health rather than political activism, because they are not that separate when political activism is your life. As comrades know, I spent 11 days in hospital seriously ill after a 6 day long political conference in March. I caught flu as well; from someone in the conference, which spread to almost everyone. I hadn’t known about that until I left the hospital – this happened despite my flu vaccine, my wearing an N95 mask from the day 3 of the conference onwards, and taking vitamins to prop up my immune system.

I want to discuss this as a political question. Don’t we have any sense of responsibility to others at meetings, conferences or events? Given this was post-Covid 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. 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 came unaware 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 by now, and we need to behave how we want the world to be in the future.

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 second 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 attend … 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.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. 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 have done too little for far too long. Getting organisers of events, meetings and protests to ensure inclusion has been a constant struggle: meetings held in places with negotiate stairs; no clear way from public transport, no parking for disabled people. Protests did not have shorter routes, areas with inaccessible public transport, disabled people and disabled organisations 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 already 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 society. If we understand disability as social exclusion; then we need to understand our own role in this exclusion. Disability is not about the specific physical impairments or emotional issues or the mental health issues we have. Those are impairments, and impairment reality differs between disabled people.

It is painful to say, but disabled people are being disabled by the left – this is an understatement, and 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 fact 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 under the capitalist economic system is not one we on the left should be reproducing. It is not our bodies, our mental health, our emotional health that are disabled; capitalism requires working class people to provide their physical 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 as profits. As such, when the UK Labour government treats disabled people not working as a supply problem , stating they do not want to work, rather than a demand problem, that employers don’t want to hire them because wages of non-disabled people are lower whilst expensive reasonable adjustments are needed for disabled employees, 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 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 within seconds; I carry the new steroid inhaler and the emergency inhaler with me at all time.

2) I’ve been a diabetic for the past 15 years; I was diagnosed as a type-2 diabetic  because 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.
My diabetes is now managed at the hospital.

Recently, at the end of June,we were planning on going for a much needed 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 maybe we should just go somewhere in England in case there was a serious problem with the diabetes, so we went to Dorset instead, a 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, and where if I had a problem, I could walk into a hospital. Simples …  

However I made a mistake, being new to the treatment, and I was talking about just giving up and going home, but we went to a local pharmacy who were absolutely wonderful. But there was another problem, so we went back to the pharmacy again; they kindly fixed that as well. The fact that I was just going to give up, a  ridiculous idea, was conditioned on the fact that I had very little support since I developed Meniere’s disease; no one had 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. 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 once again have a portion of potatoes.

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. Nothing to do with the 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 – a learning-by-doing moment. During longer meetings to address the blood-sugar level, I start 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. 

But these are all ways to win through and not let the disabilities or capitalism or other irritations stop you doing what you want to do.

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!

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