Yoga and vegetables – NOT a cure-all for chronic disease

In the wake of Bernie Sanders’ suggestions that chronic illness patients simply replace their use of opiates with yoga, my ongoing frustrations with non-disabled people’s ignorance of disability and medication in particular is running rampant. I and most other disabled people I know are frankly tired of being shamed for the medications we take, for our quality of life, often to actually keep us alive, because non-disabled people have decided that they now know everything there is to know about pharmacology (and let’s be honest, it’s often based on fearmongering posts full of ignorant rubbish spread on sites like Facebook. Or at least in my experience.)

Believe me, disabled people have probably heard all your suggestions for an “alternative to medication” before. I’ve been told it’s my meds poisoning me, to do yoga, to find Jesus… So I guess a first point to make is stop believing that you are the first person to give us this “amazing” life advice to eat more vegetables and do yoga to cure our diseases! (We *have* tried going unmedicated before, you know.) You probably mean well, but do you know how much it bores a person down to deal with uninvited advice on “cures” that 1. don’t work, 2. we have heard a million times before?

Aside from the ridiculousness of suggesting that yoga could possibly take the place of opiates and be just as effective, people seem to forget that some of us can’t actually do yoga, whether simply physically unable or because yoga and such exercise exacerbates our conditions. If you’re thinking “well, exercise usually hurts at first, but the more you push through, the fitter you’ll get and the easier it will become”, you’re probably able-bodied and assuming that disabled bodies react the same way as yours. Here’s a clue: they don’t, always. I have internalized a lot of ableism based on the “lazy scrounger” rhetoric, and often think “Are you really doing as much you can physically?” One day of pushing myself, even with a motorized wheelchair, can put me in bed in agony for days to come. I know my own body and I know its limits. I have spent years trying to keep up with able-bodied paces and limiting my medication as much as possible. All that does is decrease my quality of life, exacerbate my mental illness, and restrict my life. So forgive me if I want to do whatever I can to avoid that scenario.

The pharmaceutical industry has its problems. You’d be a fool to believe otherwise, in my opinion, but that is hardly a basis for denouncing every single aspect of medicine. There is also this widespread belief that doctors keep patients medicated in order to profit from them as returning patients. Well, there is actually a shortage of specialists to the number of patients who need them, so doctors aren’t going to run out of patients any time soon.

Yoga can help many people, but if you think that’s a universal cure-all for any disease and that we can give up our medications in favor of it, then I’ll be frank: you are wrong. If it helps you or someone you know, great! But I beg you, stop shaming those of us who it doesn’t help. We’re not just being stubborn: we have tried these things. Just because we have a pride in our disability doesn’t mean we don’t do everything we can to increase our quality of life. It’s not a coincidence that people with my main disease lupus now survive much longer with drugs like immunosuppressants than we used to, when the life expectancy was closer to 40 and the rate of serious complications was much higher. In the 50s, people could expect to live about 5 years following diagnosis. This is my 11th year with this disease, and although mine continues to progress, my medication has slowed down that progression much more than it would have been otherwise.

This unorganized post basically comes down to this: disabled people know their bodies’ limits and limitations. You don’t. Most of us have found that without medications and aids, our quality of life is just too low. Many of us also find that one of the hardest issues to live with day-by-day when you’re disabled is the ignorance and ableism of other people. We are tired of unsolicited advice from people who barely know us or our conditions. Supporting us does not involve shaming us for the things that we do to have the best quality of life we can. Many people successfully incorporate more natural remedies with their medications or even manage to come off their medications altogether; this is great, but by far this is not even a choice for most of us. If you want to truly learn about disability and disabled lives, listen to disabled people, not non-disabled people spreading inaccurate and accusatory rubbish on sites like Facebook, where you read things like how “miraculous” it is when a wheelchair user stands up, or even walks (i.e. they’re faking), when the reality is that most wheelchair users are not paralyzed and *can* stand or even walk for a time.

Honestly, the “bitter crip” stereotype is a thing precisely because non-disabled people have decided they know more about our lives and needs than we do. To support us, listen to us. Nothing about us without us.

Inaccessible bus service

So, I’ve been building up to this post for a while now, since the local bus company in my town thought it appropriate to exchange an intercity bus link between two hospitals, a spacious bus with a low step onto it and with multiple spaces for wheelchairs, Zimmer frames etc., to a barely accessible coach with only two accessible downstairs seats, stairs about a foot high each to get upstairs, when it’s a service that only runs once an hour.

Since I started volunteering with RNIB in the hospital in the next city, I’ve used the intercity hospital link bus every week to commute. It was so convenient for various reasons; my local hospital is just up the hill for me, so it’s not far to go to the bus stop; there’s enough space for me to stay in my wheelchair if I want and also for others in chairs or with frames or buggies and so on; getting on and off the bus was easy for me as it was a low step, so I could get out of my chair and gently bump it up, or stay in it and have my sister or mum (if they have dropped me off) or the driver get me on. It stops at the hospital in the next city so I don’t have to travel far to get into the department. For a few weeks, it was absolutely ideal.

One day my mum took me up and it was a different bus there altogether. Instead of the style of the local city buses, it was a double-decker coach with a different route code on it. I asked Mum to ask the driver if he was replacing the hospital link that day and he informed us that it didn’t exist anymore. Basically, a coach service with a route throughout most of Scotland had been changed to include this route. The company has lauded the coaches because they have better Wifi and comfy chairs… Yes, the seats are much comfier, I’ll grant, but I’d rather have a bus I can access rather than a padded seat… And I say this as someone with impacting hip joints that give me a lot of pain on sitting down!

The coaches that have been used 99% of the time, and I think this is the new type and the exception was an older one, has quite a big step to get onto in the first place even with the suspension lowered. Then there’s the backrest for the wheelchair right next to the driver’s box and so there isn’t a lot of space to get in and pay. The only two accessible seats without taking stairs are situated directly behind the driver’s box; there’s not much space in them at all, especially when you have sticks to deal with. I was traveling with a man who had a prosthetic leg one week, and there was not enough space for him to have his leg up; he had to sit on the side with his leg hanging into the aisle. Also, the floor space is so high that a man who I regularly sit beside on the journey can’t actually lift his legs high enough to sit straight ahead, so he too has to sit hanging off the seat. On the older coach, there were stairs to get on regardless, and to get on in my wheelchair, I had to take the very slow chair lift, which was frustrating and quite embarrassing. Everyone’s waiting to get going, and we have to wait while I board the bus and have my chair strapped in and so on. Whether people are thinking along those lines or not, I did feel like a spectacle and it was fairly humiliating. Disabled people just want to get on and off the bus reasonably quickly like anyone else.

With the service only running once an hour, it means that we can afford even less to say “Oh, it’s o.k., I’ll get the next bus.” I’ve actually had to go up the stairs at least twice. It was very difficult, painful, and awkward. The first time I was already in the access seat next to an elderly man, but a woman came on with a shattered ankle, and I felt that out of the three of us, I had the best chance of getting up the stairs. It was either that or say to the woman “No, sorry, you’ll have to wait another hour for the next bus”. I know I didn’t strictly have to, but I didn’t exactly have a good choice either way. The second time I think a couple was already in the seats, and I didn’t want to presume and ask them to move. However, a few stops later, they did come upstairs for someone else to get the access seats, so maybe I should have asked, but I don’t know if they only came up as I had because they felt someone else needed it more. Unfortunately, I’m getting to the point where I am just going to have to tell people sorry, I can’t move. It’s none of our faults but someone has to lose out.

I have to say though, the drivers have been faultless. Whether making sure I’m managing to get on board and in the seat, loading and offloading my wheelchair in the luggage space (which I do every time now, as frankly it’s just easier and I realize I’m lucky to have this option because I can get out of my chair, which some can’t), or getting me on the chair lift as the one driver did. Fellow passengers have also generally been so helpful; when I get out of my chair and leave it folded outside, people sometimes realize what’s going on and offer to put it in the luggage hold for me, or someone in front of me will let the driver know. I’m getting to know quite a few of the drivers now as it’s the same crew on shifts and I guess I’m fairly distinctive as passengers go!

I know many of the drivers have not been happy about the change, and they do realize how hard it is for passengers with mobility issues. Unfortunately, they can’t really discuss it in depth with us passengers as they could lose their jobs. A few weeks ago, someone told me that there was going to be a meeting about the coaches because so many passengers had complained, but unfortunately it seems nothing has come of it. A few days ago, I read that the bosses aren’t worried about the concerns as they’re making more money on this service than ever… Lovely ableism there of dismissing the concerns of disabled people trying to access a bus to a hospital because they apparently have enough abled passengers paying for comfy seats!

I just feel very dismissed. It’s despicable that a bus company thinks it’s acceptable to have only two accessible seats on an intercity hospital link bus that only runs once an hour. It’s used a lot by pensioners as well. It’s utterly ridiculous to assume that only two people with mobility issues, visible or invisible, will need this bus at any one time. And frankly I don’t have many polite words for the company that thinks the concerns aren’t valid or worth acting upon because abled people without access issues are managing to use the bus… Unfortunately, I’ll have to deal with it each week in the foreseeable future and hope that greedy companies will start listening to our needs. It doesn’t alienate abled passengers to include access for disabled ones, but it certainly alienates us by restricting our access and not listening to our complaints. Life in an ableist world, eh?