My friend Emmalina recently posted about ways you can respect a person with a disability. This has inspired me to write my own list since I work in disability support as well.
I’ve been working in disability support (called a disability support worker or a carer) for about a year and a half. I started off as a casual employee at an organisation which provides staff for day centres and residential facilities ( also called HOUSES, haha). I worked in many different day centres where these disabled clients go for the day to do activities and I’ve also worked in a few different houses. I’ve now settled into a permanent position at one house so I don’t move around anymore. The place I work at houses 5 people with severe physical disabilities (all in wheelchairs and most unable to talk) and there are always 2 staff on shift at all times (apart from during the night while everyone’s sleeping – then there’s just 1 person).
So my point of view is mainly from ‘group homes’. There are plenty of other people with disabilities out in society, living by themselves and are not involved in any kind of organisation. So hopefully I don’t come across like I’m lumping everyone with a disability together – I’m just sharing my experiences and they are mainly limited to group homes for people with severe physical disabilities.
Don’t assume somebody is intellectually or mentally disabled because they are in a wheelchair. This is not something I would have done before I even became a DSW, but I have witnessed a lot of people do it. Even if someone appears completely oblivious to what you are saying, or their behavior or body movements seem strange, just talk to them like you’d talk to anyone else. Maybe they do have an intellectual disability, but the best thing to do is talk to them like you’d talk to anyone else because you can’t know what they’re thinking or who they are based on outward appearance. You really shouldn’t assume anything about someone with a disability – and that leads to my next point:
Don’t do anything for someone with a disability without ASKING PERMISSION.
Don’t assume that someone needs your help just because they appear to be struggling to drive their chair properly, or have saliva dripping down their chin, or anything along those lines. The people I work with have all accepted themselves as they are. They know they have disabilities and they just want to live as independently as they can with them. Independence is important to almost everyone, including people with severe disabilities. For someone in a wheelchair who needs a lot of help with basic things, something as little as wiping their own mouth with a napkin is a big deal to them. If you just take over and do something like that FOR the person, it can be extremely offensive. I bring up the saliva thing because a lot of people with motor problems have speech difficulties and problems with “drooling” and I have worked with a number of people who were sensitive about it and found it very offensive if anyone was to wipe their chin for them. One client was at a cafe and a worker who didn’t know him very well just automatically wiped his chin and mouth without asking. The client got very distressed because they associate it with having independence taken away from them. The client got really upset and was lashing out, and this lead the worker to believe that he had a severe intellectual disability or some kind of mental illness, but he doesn’t. So please keep that in mind. The same goes for steering someone’s wheelchair for them without asking, touching their chair or their belongings etc. You wouldn’t do it to someone walking down the street, so don’t do it to someone wheeling down the street. There is no difference.
Talk TO the person
This is something I experience a LOT. If you have anything to say to someone in a wheelchair or who looks like they have a disability – speak TO THEM. It doesn’t matter if they have a carer, parent or anyone else pushing or driving their chair for them, it doesn’t matter whether they can talk back or not, talk TO them anyway. Because if they are intellectually aware and you’re rude to them by not acknowledging they exist, that will obviously hurt. I’ve had a few people come up to me in the street while I was walking with a client who steers her own chair with her head using a pointer attached to something that fits around her head. They have always asked me if *I* need any help with her. Their first mistake was by asking me and not asking her, and the second issue is that she was steering herself perfectly fine, dodging potplants and potholes perfectly fine, so why assume she’s in danger or needs help just because she’s in a wheelchair?
Don’t treat them like freaks.
This seems like a stupid point but some people really do treat people in wheelchairs like freaks, and not just little kids or rude teenagers, but grown adults who consider themselves educated and professional. So what I’m trying to say is: treat them normally but with respect. Don’t jump out of the way so fast that you fall over 2 shelves of medicine in the chemist, but don’t completely ignore them and expect them to squeeze around you. Wheelchairs can’t squeeze like people can. Also, do not point, laugh, stare or anything along those lines. Don’t talk to them in a baby voice or shower them with attention just because they’re disabled, but don’t ignore them. This seems really obvious, but unfortunately, it’s not for a lot of people.
Consider body language
A lot of people in wheelchairs do not like people to stand over them, really close. This can be intimidating and make someone uncomfortable. It happens a lot because people in wheelchairs are obviously in a seated position so their eye level is a lot lower than someone who’s standing. BUT PLEASE don’t assume that means you should completely match their eye level to yours and crouch or bend down. This can also be offensive. A better option is to pull up a chair. Of course not everyone in a wheelchair is going to be so sensitive about this stuff, but some people are. You really need to get to know people to know what their preferences are based on their personality. But as a general rule when you’re meeting someone in a wheelchair for the first time or you don’t know them very well, stand at a distance that allows them to look at your face without having to look up for ages and hurt their neck, but not too far away that you can’t interact properly. If they can’t look at your face without straining their neck, just pull up a seat or step back a bit.
Now, onto some things for people who will be working with people with disabilities. These are some things I have learned, but obviously shouldn’t be applied to EVERYONE. You get to know the individual over time and that’s the only way to know their preferences and how they like to do things. But here are some things I have learned…
If you don’t know the person that well, ask for permission to do things. Ask how they like things done and what they prefer, but don’t bombard them with excessive questions about every little detail. Treat them with basic respect and dignity. While showering or going to the toilet, always make sure they have as much privacy as possible, even if they are intellectually disabled and don’t seem to care.
Don’t turn the people’s houses or places of leisure into INSTITUTIONS. I have worked at so many houses that felt like hospitals or institutions when they are supposed to be the peoples’ homes. Obviously there are routines, but don’t get too rigid. Put the clients’ experience ahead of being as efficient as possible. Obviously efficiency is important too, but when things become TOO efficient for the staff, the clients suffer. This could include rushing clients while eating, rushing them to bed, never letting them do anything out of the ordinary or discouraging anything new, etc. I understand this can be hard, especially in places where there aren’t enough staff, but try your best and try not to let everything become a “to do list” like “toilet, shower, eat, swimming, bed” etc… it’s people’s daily lives you’re dealing with, not just items on a list.
Unless the person has a condition that makes them extremely fragile, don’t treat them like they’ll break if you take their jacket off. Just because someone’s in a wheelchair, doesn’t mean they’re any more fragile than you. Sometimes people just want things done quickly and efficiently, not ultra slow and cautious. Now of course I’m not saying be rough, and some people do require you to be very gentle… but practically everyone I have ever worked with has told me in one way or another – I won’t break!
If assisting people with eating (feeding them with a spoon etc), go at the pace they want to. Don’t rush them and go spoon after spoon, let them enjoy the food. But also don’t get distracted by people talking, television or whatever else and feed them slower than they want. Even people I have worked with, who had very severe intellectual disabilities, showed me the pace they seemed to want by opening their mouth when they were ready for another spoon.
If working with someone who has vitamised or pureed food, try and make the food look as attractive as possible. If it’s meat, potato and vegetables… it looks way more appealing when each item is pureed or minced individually and put on the plate, than if it was all mixed together into a grey/brown slop! Obviously most people won’t want to eat that or will flat out refuse.
Don’t force anyone to do anything unless you have the legal authority to do so. The only exception would be acting in the spur of the moment if someone was going to drive out into oncoming traffic in their chair, an emergency, a direct threat to the person’s life. Being a disability support worker or a carer usually does not give you the right to force anyone to do anything. This can include things like eating, drinking, taking medication or going to bed. You may know that they need to eat, take their meds or go to bed, it is probably the best thing for them, but you’re better off to consult with someone else about the issues… maybe you can talk to their doctor about the medication or call the hospital if it’s very important that they take their medication at a certain time every day. Don’t physically force somebody. You’d get fired if you did that in my organisation, we have a lot of training about this kind of thing and strict rules and procedures… however, I know there are a lot of disability support workers and carers who work independently or privately and don’t get that kind of training. It’s really important that you balance the client’s safety and health, with their freedom of choice and independence. There is something called Dignity of Risk which means people have the right to choose to take some risks in life, or do some things that may not be the best choice. You can’t wrap someone in bubble wrap and expect them to be happy just because they’re physically safe. We need a lot more in life than physical safety to be happy. We need respect, dignity, freedom of choice, independence and so on.
Like Emma said… don’t de-skill people. I have seen this a lot. For example, there is a client at my work who falls over when she walks, fairly regularly. Other staff get very stressed and angry when she falls and tell her that she should of stayed in her wheelchair. But this person didn’t even USE a wheelchair 6 months ago, but due to people being too stressed by her falling over now and then, they have encouraged her to stay in her wheelchair as much as possible. Now she has lost strength in her legs and she’s getting worse and worse. That ties into Dignity of Risk, too. We should do what’s necessary for people, but we shouldn’t assist people with things they are perfectly capable of doing by themselves. We also shouldn’t assume people can’t get BETTER at things like anyone else. People with disabilities, even with severe intellectual disabilities, can still learn things. We should help people to be as productive as possible, not excuse them from life because they have a disability.
Now there are SO SO SO many more things, I could go on and on, but maybe I will do more posts about it. For now, I need to have dinner and go to bed!