Back in March I wrote about the threatened ban on plastic straws. In it I responded to a lot of the questions non-disabled people were asking when disabled people told them they really do need straws. So if you’re thinking “What about…” or “Just carry your own” or “Why make such a fuss about straws?” please read my original post, and then come back to this one.

This is an update, both on what’s happening on the ground day-to-day, and on how it’s impacting on my wellbeing, and that of countless other disabled people.

First, a little background: It’s 5.30am, I’m in significant pain, I’m lying flat, and my mouth is ridiculously dry and sticky from the medication I take. This is what’s beside my bed:

It’s one of my lidded camping cups which I drink from when I’m at home. It has a biodegradable plastic straw poking up through the drinking hole so I can use it independently while I’m lying down. I’m too unwell to sleep or to sit up and drink, but I’m using the small amount of energy I do have to write this post because there are many disabled people who won’t be able to do even this.

These are the ten things I want everyone contributing to this debate to know:

1) It’s already happening – The proposed ban on straws hasn’t yet been imposed here in the UK, but at the start of this month Seattle (Washington State, US) became the first place to officially ban them. But even though there’s not yet a ban here, many restaurants and other service providers have voluntarily stopped stocking plastic straws. Of these, only a few that I’ve encountered offer any sort of alternative, and in most places where they have, they’re using paper straws. Straws made of paper, like those made of metal, glass, bamboo, silicone, pasta or straw don’t work for most disabled people.

2) Demonisation leads to abuse – A few weeks ago I was out with my support worker Joyce and a young person with Tourettes and their family. I’d run out of my own straws so asked for a straw in Giraffe restaurant. Instead of providing this, the server told me off for damaging the environment, in front of the whole table and many onlookers. I challenged this and explained that many disabled people rely on straws to drink and that they had a responsibility to provide them when asked. He apologised and got me a straw but this is not an isolated occurrence: I and many other disabled people reliant on straws to take fluids are facing increasing hostility for using them. A ban would certainly exacerbate this.

3) Listen first – I can pretty much guarantee that in response to this post I’ll get a lot of advice about alternatives to plastic straws from people who don’t seem to have read what I’m saying, or to have listened to the explanations of why none of the alternatives work.

Many disabled people are getting worn down by relentless challenges. Why aren’t we being listened to when we say what we need? Here are just a few examples from the last twenty-four hours.

What we ought to be doing is working together to find pragmatic, inclusive solutions rather than squander precious time and energy.

4) Don’t medicalise drinking – Much of my life and independence is already medicalised and dependent on the support and scrutiny of professionals – access to pain relief, social care support, my wheelchair to name but a few. The idea that disabled people would have to apply for some sort of medical exemption from the straw ban is appalling to me, from both a practical and an emotional perspective. Are we really going to ask our overstretched NHS to develop and implement a system for approving the use of straws?

5) This is not laziness – I’ve seen disabled people who’ve spoken out about their need to use plastic straws labelled “lazy”. Many disabled people have put in a huge effort to research and test alternatives, and then to describe in detail what they need. It’s already taken me two hours to write this, my second post on the subject, and I haven’t even finished it yet. Like so many others, I’ve tried all the possible alternatives and established that they don’t work for me. My current solution is the greenest possible: lidded cups at home (when I can sit up) and biodegradable straws when I’m out and about, or need to drink lying down. The idea that I and other disabled people are objecting to the ban out of laziness is deeply hurtful.

6) The costs are rising – I started buying biodegradable straws a couple of years ago. In August last year they were £2.80 a box, this rose to £7.24, and now they’re ‘currently unavailable’.

In under a year the price has risen by over 250%. Is it acceptable that disabled people shoulder the financial burden of making greener choices? Where’s the pressure on manufacturers to invest in environmentally sound options?

7) Your assumptions could well be wrong – I’ve seen a number of threads where non-disabled people have said things like:

“Surely if a person has a disability that means they need help to drink, don’t they have a carer to help them?”

This is a massive assumption and in many cases it’s wrong. We live at a time when many disabled people are losing vital financial and practical support. We’re even getting to the point where disabled adults are being expected to wear nappies at night because it’s cheaper than having someone on hand to help them use the toilet.

Many conversations on this subject ignore the fact that people with learning, cognitive or memory-based impairments may not be able to plan ahead in the same way as a non-disabled person.

I’ve seen lots of “buy a reusable straw and wash it”, a recommendation that completely fails to recognise that even if someone had the dexterity to wash a fiddly straw, many sinks and basins are non-accessible.

8) Let’s talk about disposal – One of the driving forces behind the straw ban is the amount of plastic ending up in our oceans. Recently there was a particularly distressing video of a turtle having a straw removed from its nose, and like many people I’ve been shocked and deeply worried by these images. But one of the big questions they make me ask is how are plastics ending up in our oceans?

Surely we need to concentrate much more directly on the safe disposal and re-use of plastics. Straws have become a focus of the anti-plastic campaign because to many people they seem like a frivolous luxury. But our oceans are full of other damaging plastics that most people would see as essential, like medical gloves for example. We need to make sure that none of our waste gets dumped in the natural world, and there’s clearly a compelling need for tougher legislation and joined up international working.

9) This isn’t a choice between individuals and the collective – many disabled activists have been told they are selfish for advocating for their needs and those of their community. It’s not just a tiny minority of disabled people who need straws. It goes right across all impairments and the requirement is much bigger than many non-disabled people imagine, so it’s vital that disabled people’s need to use plastic straws should not be characterised as ‘selfishly acting against the wider good.’

10) Take this seriously – If you don’t require a bendy straw to drink or don’t love someone who does, you might think this is a trivial issue. But please do recognise the huge effort many disabled people are putting into this issue, take it seriously, and act in solidarity us.

It’s now 8am – it’s taken me two and a half hours to write this. It’s fairly long, but I hope you’ve taken the time to read and that you’ll share it with others if you can.

It’s in all our interests to find workable alternatives to plastic and to preserve our natural world, but we also need to make sure everyone can still drink.

The most practical and common sense approach is surely for plastic straws to be provided only if requested and not automatically given to every customer, and for businesses to have rigorous environmental and recycling policies which are inspected and reported on. There should be clear and consistent advocacy for the rights and requirements of disabled people within any proposed legislation.

The speed with which this campaign against plastic straws has developed is phenomenal. If the same energy and momentum were applied to tackling some of the many barriers disabled people experience, our society could be dramatically more inclusive in next to no time. Imagine, for example, if all the big companies who are banning straws (Starbucks, McDonalds, etc…) were to install Changing Place toilets. That would mean disabled children like eleven-year-old Adam could go out, instead of going to court.

So far there’s been no ban, no parliamentary debate, and no impact assessment but I’m already finding it much harder to drink safely outside my home – even though I carry my own straws with me.

Please do advocate for inclusive approaches to plastics within your work place or community. You don’t need to have lived experience of the needs of disabled people to be an ally. We need to make the voices and requirements of disabled people central to this debate, rather than diminish and silence them.