The response to my email tells me to call them.<\/p>\n\n\n\n
I have already explained that telephone calls are difficult for me. Not because I dislike them. Not because I am trying to be difficult. Because I have Long Covid, and cognitive exertion does make me physically ill. Still, the email tells me to call.<\/p>\n\n\n\n
So I read it again. I go back through old messages because I cannot remember whether I have already answered the question. I search for a name I know I have seen before but cannot retrieve. I try to work out which person said what. Somewhere in the middle of all this, I start wondering whether I am the problem.<\/p>\n\n\n\n
I may be able to make the call. I could try to focus better in choosing the right digits in their menu. Maybe I am making too much of it. Maybe everyone finds these things exhausting. That is what happens when you live with a brain you can no longer fully trust. You start checking yourself before you check the system.<\/p>\n\n\n\n
Eventually I make a call. Three attempts to pass the menu and another person who encounters me kindly. They listen. They say they understand. Then they ask me to do exactly the thing I just explained is difficult for me.<\/p>\n\n\n\n
This is the frustration I keep coming back to: discrimination does not always look cruel. Sometimes it looks perfectly polite. Nobody raises their voice. Nobody says anything offensive. Nobody thinks they are treating you badly. Sometimes it is simply a person doing what they have always been told to do. And that is the problem. <\/p>\n\n\n\n
Follow procedure, treat everyone the same, offer support.<\/em> Unfortunately, this is how the system works.<\/em> I have heard versions of these sentences so often that I have started to think of them as comfortable lies. Not because everyone saying them is lying on purpose. They are comfortable because they make it possible to keep going exactly as always. That is the problem.<\/p>\n\n\n\n If this is \u201cthe process,\u201d then nobody has to ask whether it is hurting someone. If everyone is treated the same, nobody has to think too hard about whether the same treatment has a very different effect on different people. If the organisation offered support, then perhaps it does not matter whether that support was actually usable.<\/p>\n\n\n\n Their story remains intact. We helped, we listened and followed the procedure. And somewhere on the other side of that procedure, a person is still struggling. A person who wasn\u2019t acknowledged, seen or understood.<\/p>\n\n\n\n I have Long Covid. My brain does not work the way it used to. I can lose words halfway through a sentence. I forget things I have just read. Too much information starts to blur together. Switching between emails, phone calls, portals, letters and different people can completely exhaust me.<\/p>\n\n\n\n You would not necessarily know that by looking at me. I can sit there and sound coherent. I can answer questions. I can even look calm while my brain is doing far too much work to keep up. That makes invisible disability very convenient to ignore.<\/p>\n\n\n\n The organisation may record: Call completed: 18 minutes.<\/strong><\/p>\n\n\n\n My body may experience something completely different. That call can cost me two days. Sometimes much longer. Sometimes even two weeks.<\/p>\n\n\n\n The call ends for you. For me it doesn\u2019t. My brain keeps going, sometimes for hours, sometimes for days.<\/p>\n\n\n\n And this is where the sentence we treat everyone the same<\/em> starts to bother me. It sounds fair. I used to think it sounded fair too. But giving everyone the same staircase does not make a building accessible. Giving everyone the same deadline does not mean everyone has the same chance of meeting it. Giving everyone the same telephone number does not mean everyone can use it without consequence. Sometimes treating everyone the same means pretending everyone has the same body and the same brain. We do not.<\/p>\n\n\n\n I think people understand this more easily when disability is visible. A wheelchair in front of a staircase makes sense. The barrier is obvious.<\/p>\n\n\n\n Cognitive disability is harder to point at. You cannot see the moment my brain stops processing what you are saying. You cannot see me afterwards trying to remember what I agreed to. You cannot see me lying down because a conversation that looked completely ordinary from the outside has taken everything I had available that day. You certainly cannot see tomorrow.<\/p>\n\n\n\n And yet the system keeps asking: Read this, remember that, call us, get your prescription in our system, log in to your personal space to find out about your appointments. Explain what happened, tell my colleague, tell another colleague, follow up, escalate, complain when nobody solves the problem, and please do this before Friday.<\/p>\n\n\n\n There is something almost ridiculous about asking someone with cognitive problems to prove those problems by being exceptionally good at administration. But once something becomes standard procedure, we stop noticing how strange it is. And when the person cannot manage, the language changes. They were difficult to engage. They did not respond. They became emotional.<\/p>\n\n\n\n I find that last one particularly interesting. Because sometimes people become emotional after explaining the same thing over and over and nothing changes. Something that happens repeatedly while contacting various organisations.<\/p>\n\n\n\n Sometimes frustration is not evidence that someone is unreasonable. Sometimes it shows they have reached the end of what they can carry. The system rarely records that part. It records the reaction, not everything that led to it.<\/p>\n\n\n\n Then there is the sentence I have heard so many times: \u201cI understand, but\u2026\u201d I think disabled people live in everything after the but.<\/em><\/p>\n\n\n\n I understand, but you still need to call. Organisations are very good at saying they care about accessibility. I do not even think that is always cynical. Many people genuinely mean it. But inclusion is easy when it stays abstract. It becomes more revealing when somebody asks you to change something. That is where the real test is.<\/p>\n\n\n\n A deadline may need to move multiple times or be divided into smaller, doable deadlines. Communication may need to happen another way. One person may need to take responsibility instead of sending someone from department to department. Someone may have to read what has already been written rather than asking a sick person to explain it all again.<\/p>\n\n\n\n None of these things is dramatic. They are just less convenient. That seems to be where accessibility often starts to wobble. And yet organisations change things all the time. They change software. They restructure. They launch new systems. They redesign websites. They change policies when the organisation needs something to work differently.<\/p>\n\n\n\n So I struggle with the idea that one small adjustment for a disabled person is somehow impossible because \u201cthis is just how we do things.\u201d Someone decided how things are done. Someone can decide differently.<\/p>\n\n\n\n I do not think every employee enforcing an inaccessible process is a bad person. Most are doing exactly what they have been trained to do.<\/p>\n\n\n\n I also do not think every organisation that discriminates intends to discriminate. But intent only takes us so far. If you accidentally stand on my foot, it is an accident. If I tell you that you are hurting me and you continue standing there, something has changed. You know now. That matters.<\/p>\n\n\n\n The same is true when someone tells an organisation that its way of working is making their disability harder to live with. The first response may not need to be a policy explanation. It could be curiosity. What can we make simpler? What are we asking this person to repeat that we already know? What is actually necessary? Is there another way to do this?<\/p>\n\n\n\n I wish organisations asked those questions more often. Instead, people like me are often described as complex. Complex patient. Complicated customer. Complex case. Sometimes I wonder whether complex<\/em> means something much simpler: This person does not fit perfectly into the way we prefer to work.<\/p>\n\n\n\n A human being is underneath the case number.<\/p>\n\n\n\n I want to say a soul, even though I know that sounds strange in an essay about portals and telephone calls and forms.<\/p>\n\n\n\n That may be why I want to say it. There is a soul underneath the case number. Someone finally opening the email. Someone trying to remember what has already been said. Someone deciding whether engaging with your organisation today means they will still have enough energy to shower, eat, spend time with their child, or recover.<\/p>\n\n\n\n Your system does not record that. It records the call, the email, the form, the deadline. My body keeps a different record. Procedure can be followed perfectly and still produce an unfair result. A person can be kind and still be part of an inaccessible system. An organisation can mean well and still discriminate. Both things can be true at once. That is the point.<\/p>\n\n\n\n Accessibility is not teaching disabled people to become better at surviving systems that do not work for them. I do not need to become more resilient; I do not need another lesson in keeping better records; I do not need to become exceptionally skilled at explaining my limitations about exactly the right tone.<\/p>\n\n\n\n Sometimes the system needs to do some of the adapting. Yes, that may be inconvenient. I have stopped believing that organisational convenience should always win.<\/p>\n\n\n\n Disabled people already absorb so much of the inconvenience. We chase, explain, repeat, adapt, recover. Then the organisation calls the process equal. I am tired of that lie.<\/p>\n\n\n\n I do not want another statement telling me you understand. I want to know what your interpretation changes. I do not want sympathy for how difficult the process is for me. I want the process to become less difficult. I do not want equality used to defend what is clearly not fair. That is the only point that matters. <\/p>\n\n\n\n There is a soul on the other side of your procedure. Listen to it.<\/p>\n\n\n\n Please act as you can see it.<\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" The response to my email tells me to call them. I have already explained that telephone calls are difficult for me. Not because I dislike them. Not because I am trying to be difficult. Because I have Long Covid, and cognitive exertion does make me physically ill. Still, the email tells me to call. 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I understand, but you need to complete the form.
I understand, but another department handles that.
I understand, but this is how we do it for everyone.
Maybe you do understand.
I do not know what that understanding is worth if nothing changes afterwards. <\/p>\n\n\n\n