Disability Life Hacks

In her latest blog post, Bernie Hunter share her top life hacks – those tips and tricks for improving your everyday skills.

Getting ready

I am independent so I like to do as much as I can for myself including getting dressed, it can be a challenge to get myself dressed due to having Cerebral Palsy but I have my own way of working that is easiest for me. Here is an example of how I put on my socks- I get my clothes out the night before so I am prepared for the morning, I turn the top of my socks inside out, this means that I don’t have to spend time in the morning separating them before I can put them on, this is because of my hand movements. I do need assistance with some things such as putting my hair up etc.

Putting my boots on

I have just recently bought new boots with a zip on the side of them, I find it a real challenge to zip them up myself as it is a small zip and I can’t get a grip of it so instead of using my fingers I just use my pinky then I grip the zip with the pam of my hand and zip it up… it is still a challenge but I won’t accept any help and I do get there in the end!

House Equipment 

My house is not really accessible if you use a wheelchair like I do but that changed 10 years ago when I finally got a outside stair lift. There are 8 stairs to get into my house and it was getting harder for my family to help me up and down the stairs as I was getting older and plus I couldn’t have my wheelchair in the house. The stair lift is electric and is able to take the weight of my power wheelchair, I control it myself by pressing a button- my stair lift has broken now a number of times in the past but in saying that, I don’t know what I would do without it!

Communication & Equipment

I use a AAC device to communicate due to having difficulties with my speech, I try my best to use my device but I sometimes feel under pressure when I am talking to people as I feel like I keep people waiting so if I am going to work and I have an idea of what people are going to talk to me about, I will programme my answers in advance into my communication device and this saves me time and effort.

I run a fan club for a TV comedy sitcom and as part of my duty is to post video clips of the show so I record clips off of my computer onto my phone. I find it really difficult to hold my phone steady due to my involuntary movements, I overcome this task by attaching my phone to a selfie stick which is on a stand and this allows me to take pictures and videos perfectly.

Writing

Most people hardly write anymore due to the amount of technology that is available these days but I personally like to still handwrite just to keep the skill. At primary school, I was never a good writer because of my hand movements due to my Cerebral Palsy so it was always a challenge for me. I have noticed a big improvement with my handwriting, in recent years. I think it is because I am more relaxed and I can write in my own way using an non slip mat to hold the paper in place and the right pen which I can easily grip.

List of things that help me

Wheelchair Accessories: Net Bag, Cup Holder, Clutch Bag

Eating & Drinking: Neater Eater, Cup Cover

World Toilet Day  

World Toilet Day (WTD) is an official day organised by the United Nations on 19 November to inspire action to tackle the global sanitation crisis. Worldwide, 4.5 billion people live without “safely managed sanitation”. World Toilet Day was established by the World Toilet Organization in 2001.

By Jill Clark, Bobath Scotland Communications Assistant.

Everyone don’t realize how going to the toilet is a part of everyone’s everyday life and take it for granted. Everyone should have access to a toilet everywhere – at work, home, or just out and about. 

But for a lot of disabled people like myself getting access to the toilet can be a big challenge, because we require a hoist to get on and off the toilet. Everywhere should have a standard disabled toilet, but a standard disabled toilet isn’t any good to a lot of disabled people. 

So, there is a type of toilet called “Changing Places”, which has a hoist, adult-size changing bed and is big enough for a person and two support workers. 

But there is a lack of these toilets, and because of that there is a lot of  people and organisations who campaign and raise awareness of Changing Places toilets. 

One of these organisations is PAMIS. PAMIS (Promoting a more inclusive society) is a Scottish charity which supports people with profound and multiple learning disabilities, PMLD – their families, carers and professionals. PAMIS is the co-founder of the Changing Places Campaign and the lead charity for this campaign in Scotland. PAMIS are also members of the Changing Places Consortium.

The Consortium campaigns throughout the UK and beyond for Changing Places toilets to be provided in all public places, including city centres, shopping centres, railway stations, airports and leisure complexes.

As I have a disability, I do a lot of campaigning myself for Changing Places toilets and raising awareness of the need of these important toilet facilities. I am well known as The Toilet Woman, and I have my own FaceBook page. I go out and about in Glasgow to see if anywhere can get a Changing Places toilet, and I email places too. I was featured on the STV website recently, raising awareness of the lack and the need of Changing Places toilets

Glasgow now has quite a few Changing Places toilets, including the Hydro, Central Station, Glasgow Airport, Braehead shopping centre and more to come.

So on this World Toilet Day I hope to get a message across that going to the toilet is a big part of people’s everyday lives, and having access to a toilet is really important, especially to disabled people.

Why we work: being disabled and employed

Some people may think that disability and employment don’t go in the same sentence. But in this blog I have interviewed a number of disabled workers who I hope will change people’s views. 

Research from the Scottish Government says that: “Disabled people are 20% of the population but make up only 11% of the private sector workforce and 11.7% of the public sector workforce.” Which is quite poor in 2018 especially when everyone tries to be included, especially disabled people. But there are a lot of disabled people out there who work and love working.

I am 26 and have cerebral palsy. I am in a wheelchair and communicate through a communication device. I don’t let my CP get in my way, so I work which I love. I am a Communications Assistant at Bobath Scotland where I started out as volunteer and then I got an internship for 3 months through Inclusion Scotland. But luckily enough Bobath got funding from Community Jobs Scotland to keep me on as an employee, which is fantastic. As I said before, I don’t let my cerebral palsy stop me, but I need to have two carers to support me to get to and from work and who also support me during the day at work, which is funded by social work. Last year, social work tried to change my carers around and they asked me what do I get out of working, making it out, if I am disabled then I shouldn’t be working, but lucky enough me and my fantastic Mum and Dad got it through to them how important my job is and they kept my carers as they were. Why do I want to work? Well, why not? Just because I have a disability doesn’t mean to say that I can’t or shouldn’t be working. I love it that I get up in the morning and know that I am going to work and putting my ability to use.

As a disabled person I am really interested to hear from other disabled people about their own experiences of employment, so I have been in contact with a few people who are happy for me to include their experiences in this blog.

Marion Burns

Marion Burns is 34 and lives in Renfrewshire, She has cerebral palsy and currently volunteers with Bobath Scotland. Previously, Marion has been employed as an Advocacy Worker, a job which she said she “loved”. For Marion, work is an important part of her life. She told me, “I love being a working woman, despite my disability, so that I can be part of society – that means a huge deal to me!”

When Marion was an Advocacy Worker, she enjoyed supporting other people. She said, “When I worked as an Advocacy Worker, I used to be a voice for people who were disabled or had other health problems, helping them from house issues to care issues. Once, I got a lot of money back for someone.”

But, she also found it difficult to get a job in the first place and felt that she didn’t get the help she needed. “It was quite hard to find something, especially when I found no support from the Job Centre. I was lucky enough in that I knew about Advocacy, and thought that I will give it a try”

Andrew Tomlinson

Andrew Tomlinson is 35 living in Glasgow. He has cerebral palsy and works at Penilee Credit Union as a Financial Admin Assistant.

Andrew was unemployed for two years but he wasn’t about to give up looking for work. He started as a volunteer in Glasgow South West Regeneration Agency in the accounts department before he got his paid job.

But Andrew thinks that it was more difficult to find employment because of his disability, and he thinks there’s steps that can be made to make it easier. He thinks the Government has taken backwards steps with access to work and that better public transport infrastructure would help everyone.  And he added, “We need to work as a community of equals – both able bodied and those impairments working together to create pathways in the future”.

Andrew points out that, “Everyone wants to work I think. It’s about community working together for a common goal. It’s important socially and it’s important for creating relationships. I think employment is great in creating a sense of achievement, of adding value to society and the economy building for tomorrow. It’s also better than watching Jeremy Kyle”.

Elaine Boyd

Elaine Boyd is 48 and lives in Glasgow.  Elaine works as an Associate Director of Audit Quality at Audit Scotland.

Elaine was lucky enough that she got her job without any problems but she notes that she is very aware that this isn’t the case for everyone who is disabled.

Elaine adds that, “It is important for me to work and have self-worth and contribute to my family’s income to enable us to enjoy life. I also like to think I can be a good role model for disabled people in demonstrating my ability to work”.

Michael McEwan

Michael McEwan is 34 and lives in Glasgow.  Michael has cerebral palsy and leads a busy working life, including being a freelance journalist and working as the Chair of East Renfrewshire Disability Action.

Michael notes that it was quite difficult for him to get a job because of his disability but added that, “but I feel that my Disability should not stop me in any way and it should not be any more difficult.”

Michael likes working because it gives him a chance to make new pals and to get more confident at his job.

From all of the feedback of these four people’s experiences, and my own experiences of employment, it shows that disabled people do want to work, but there might be a few issues for some disabled people such as myself and Marion who want to work but have had to fight for support workers to be able to do so. Or Andrew and Michael who found it difficult to find a job because of their disabilities. So overall, yes there are some issues but we all work around it because we do want to work and we don’t want to let our disabilities get the best of ourselves.

Coming back to my own experience about my social worker asking me what do I get out of working, I really hated that because I could have been like, “Oh well, I have a disability and I don’t need to work, so I am not going to get a job because I am disabled”. But from a young age I always wanted to work and I have worked so hard to get to where I am today, so for someone to question me because I am working was really hurtful for myself and my Mum. Without being cheeky, and I’m sorry if I hurt anyone by saying this, but there are a lot of people out there who have nothing wrong with them and don’t want to work, but there are people like myself who are disabled and do want to work.

I am very proud of myself for getting a job and I can honestly say I do love my job. There are some days when I don’t want to get up and go to work like everyone does, but overall I am very proud to have a disability and to be able to work. I hope this blog has shown that disability and employment can and do go together.

What’s a Neater Eater? 

In the first of a series of equipment reviews, blogger Bernie tells us about the Neater Eater

The Neater Eater is an aid to assist me when I am eating, it is a piece of equipment that attaches onto a standard table, with it’s own plate and spoon which attaches onto a bar and this moves up, down, back and forward- this is how you control the spoon, it has also got grips on the bar and this makes it easy to hold.

 There are two versions of the Neater Eater… a manual or electric version. The electric one is for people who are not able to use their arm to physically hold the Neater Eater’s bar to control it down to pick up the food then up to their mouth. This one can be programed for the times at the rate that the person eats at, it is usually operated by a button but it can adapted to be operated by switches. The manual one is not electric and you need to use your hand to use it to operate the Neater Eater which I can to do.

 I have Cerebral Palsy    which effects my movement, I find it very challenging to eat certain types of food by myself especially liquid foods like- cereal, soups, beans, peas, noodles and yogurts. All foods that require you to eat with a spoon, I can’t physically get these onto a spoon and into my mouth without dropping the food. This is because of my involuntary movement, so I have had help from family members, who I feel comfortable with, assisting me at meal times for most of my life.

In 2017, is when one of my family members found out about the Neater Eater and we looked into it. I got in touch with my O.T department and an O.T came out to my house and assessed me. The next step was to request a home visit from the company to assess me and to demonstrate the Neater Eater…this was to see if I would benefit from having one of my own and also to see what type of Neater Eater that would be suitable for my needs…the electric or manual one. The process of the order took a few weeks as funding has got to be sorted out but it was definitely worth the wait.

 Once the piece of equipment is set up by the company, to best suit people’s individual needs. It is ready to use. As I have said, I have the manual version of the Neater Eater. To operate it all I have to do is put my hand on the bar which has grips on it which secures my hand and the spoon is attached onto this part, I lower the bar down until it reaches the plate, I pull the bar forward in order to get the food onto the spoon and then you have the option of keeping your hand on the bar or taking you hand off as it has springs built into the movement of it, meaning that the bar comes back up automatically to the level that my mouth is at and then all I have to do is pull the bar forward, towards me and take the food off of the spoon. You just repeat these steps up until you are about to finish, the plate spins round and I use my other hand to spin  it round while holding the bar down in order to get the food that is round the edges of the plate. There are also other types of accessories such as cutlery – spoon or fork that you can get for the Neater Eater. I personally just use the one spoon and plate for all foods as I can manage but other people might prefer to change the spoon or plate, depending on the type of food that they are having.

Overall, the Neater Eater has made a big difference to me, it has given me independence at meal times, I don’t need any assistance with liquid foods anymore…I have more of a choice of foods now whereas before, I always had to pick the easy option like solid foods that don’t require you to eat with a spoon. It’s amazing how my movements does not affect how the Neater Eater operates.. No matter how much I move, the bar and spoon stays in the set position.

I have to put so much more effort into doing tasks as my muscle tone tenses up when I’m concentrating on something, this makes me really tired as I am putting a lot of energy into it and before I got the Neater Eater I often felt tired after eating foods that I needed a spoon for, even know I had assistance at meal times- I still tried to do as much as I could myself. Now I have got the Neater Eater, I don’t have to put just as much energy into it- making me enjoy my meals more.

Check out my demonstration of the Neater Eater here: https://youtu.be/S6HYyDMdF6I

To find out more about the Neater Eater go to the following website: http://www.neater.co.uk/neater-eater/

 

Bernie’s top equipment and gadgets – eating and drinking

Neater Eater

This piece of equipment allows me to feed myself, using a spoon. I have Cerebral Palsy so controlling my movements can be difficult but this feeding aid really makes a difference to my daily life, read my blog about the Neater Eater for a more detailed explanation of the aid.

Plastic Cutlery

As I have sudden hand movements because of my Cerebral Palsy, I am not able to use metal cutlery. If I was to move the wrong way while using metal cutlery, I could hurt my mouth. I can feed myself with certain foods so I use plastic cutlery, which I feel more confident using as I know that if I was to move I couldn’t hurt myself. The plastic cutlery comes in a pack with forks, knifes and spoons (6 of each), they are a bit thicker which makes it easier to hold and they come in light colours too- grey turquoise and pink. Where to purchase the plastic cutlery – Ikea, in the cutlery section of the store, or alternatively online.

Plate Guard

This is a plastic guard that fits tightly around the rim of any plate, it fits on a smaller size of plate better. The plate guard is curved and it prevents food from falling off of the plate. The aid acts as a barrier too, you can push the food against it while you scoop your food onto a fork or spoon and it works better with certain foods such as mashed potatoes. It really helps people who only can use one hand as you don’t have to hold another piece of cutlery in order to get the food on the spoon. The plate guard clips securely onto the edge of a standard plate and it is easy to get on and off. The product can be purchased from the following website.

Dycem

This is a non-slip mat, it is a rubber texture, that is designed to grip and hold things still. Dycem prevents most things from slipping and is really helpful to people who have Cerebral Palsy. It can be even more challenging if items are moving about while you are trying so hard to do a task. Dycem stops movement and this makes life a lot easier. The mat works best on hard surfaces and needs to be totally dry in order for it to grip items. I use Dycem daily to help keeps things steady- at meals times to hold the plate, using my roller ball mouse when I am on a computer, writing and drawing- Dycem can grip paper and many other items. This aid is essential to me and I properly wouldn’t be able to do tasks without the non-slip mat as it would be a real struggle for me. The Dycem product can be purchased online.

Safe-Sip

This is a silicone drinks cover that fits over cups, glasses and cans. It basically stops your drink from spilling even if you accidentally knock it over or find it difficult to hold a cup or glass still, like myself. The Safe-Sip cover prevents any leaks. It really is an amazing aid that allows me to drink out of a cup or glass independently and I don’t have the worry about it spilling. The covers are easy to put on and off although you have to be careful as the silicone can rip easily. In order for the covers to grip onto cups or glasses, they both need to be completely dry. Another point about the covers is that they hold straws in place….there is nothing worse than having a straw moving about while you are trying to have a drink. This product has made a big difference to me, I now can have my tea out of a mug whereas before I had to use a plastic bottle with a straw so I love the drink covers and I would highly recommend the product to anyone. Visit Safe-Sip’s website to purchase a pack.