Guest post by Eva Luna-Rose on the #iAm♿️ Project & on using mobility aids

I don’t know anyone that uses mobility aids that is my age - I used to push my step gran to the cinema but that’s it. My experience with wheelchairs, walking sticks, crutches and rollators has been with passing acquaintances, no one that has deeply impacted my life.

My hands started shaking last October and by March I couldn’t stand by myself. It was too quick for me to process really so I just kept getting on with it.
Taking the dog out for a walk I started by using hiking poles for balance and hoped no one would see me. After getting blisters and shoulder ache, I borrowed that same step gran’s canes. She has loads but none of them were the same so they were different heights and drastically different patterns.

So after too long I bought my own sticks and cried. I didn’t want to have to use walking sticks, I didn’t want to look different, I didn’t want to be able and I didn’t want to be in pain. But then I came to the point where the sticks weren’t enough and I cried some more. I eventually gave in and bought a wheelchair.

It was the best decision of my life. I cried when I got in it and moved around because I was free. My knees weren’t in as much pain, I could keep up with everyone else, I could leave the house. I COULD.

And it made me realise that I loved my wheelchair straight away. But before I had it, I was terrified. I started the #iAm♿️ campaign to help not other people deal with how they felt about their mobility aids, but more selfishly for myself.

But it has grown into more than that. I get people I’ve never met messaging me, thanking me, for sharing stories about people with disabilities - helping them realise that there isn’t anything to be afraid of.

Getting a mobility aid isn’t giving up. It is taking control. The #iAm♿️ campaign has been fundamental to how I view myself as a wheelchair user, but it has also opened my heart to so many more stories and amazing people - that it’s changed who I am as a person.
I hadn’t ever come across a place to share what a mobility makes us feel in a positive light because we are taught that disability is a bad word. It is not. #iAm♿️ disabled and #iAm♿️ proud.

Eva Luna-Rose,

@wheely_good_time

#iAm♿️ Project website

Blogging with a disability/chronic illness

You may see my blog all neat any tidy but on my best dash board I currently have 81 draft posts and 12 scheduled posts. I does look a bit like organised mess, but at least it's all in date order and I can see the dates.

The drafts are either post ideas that have come to my mind that I want to write about at some point so I make a post with the heading and leave it blank like 'Grieving for my health' to work on at some point or that I'm currently working on. Or they're awareness events that are coming up so they're almost like reminds a) of the event and b) to start working on the posts for the event at some point or that I've already made a start on typing e.g. 'Jeans for Genes Day'. 

The scheduled posts are posts I've finished typing and I've set it to automatically publish on a certain day.

The only post I really do 'live' is my weekly journal which I type as I go through the day or I write at the end of the day depending on how bad my memory is that day.

I can only manage to type in small amounts which is manageable for me. I often write week or months ahead of times for awareness events posts, I even have some things that I have a reminder for to I'm working on or have even finished and scheduled to publish next year!

Having bad memory loss at times and being able jot down post titles and leave it to work on another time and being able to work bit-by-bit and save what I've done is really really helpful to me. This especially good for me as typing is quite tiring as I'm having to think and research etc and alongside that typing can be painful for my hands with my hypermobility. Unfortunately my Dragon (voice activated software) doesn't work on this side of my MacBook.

Some blogger have a set day in which they publish. I personally like to spread posts out so  I'm not having a time where there's say 6 posts all close together and then the following week there's only 1 post (this includes gusts posts). 

May was a busy month with it being M.E. Awareness Week/Month, Mental Health Awareness Month and EDS/HSD Awareness Month so I had posts of my own put my journal posts alongside guest posts so using a calendar I planned how to organise posts.

So, here are some of my tips for blogging when you have a chronic illness/disability:

1. Plan, plan and plan!
2. Keep a note for post ideas and what you want to write about - you can either keep it in a notebook or on the 'behind the scenes' of your blog (I have so so many draft posts on the go. I just jot down a title, a few notes and links and then I can go back and keep adding to it until the post is ready to be published, or if it's for a particular occasion I try get ahead of schedule and then set it to auto publish on the day).
3. Get ahead of time - days, weeks, months or even a year. This is especially helpful if you're planning to write for awareness events.
4. Write in amounts that are tolerable for you; even if it's just a paragraph at a time. Don't push yourself beyond your limits as blogging will just start to feel like a chore rather than something you enjoy doing.
5. Have a tidy up of your blog to help make it more organised which can help you have a tidier mind.
6. Research, look at other blogs, current hot topics or places like Pinterest for inspiration for new blog ideas to to find out about the awareness events you want to write about and raise awareness about.
7. Keep it simple. You don't always have to write a long saga of a blog post.
8. Be mindful of the time. It's easy to get lost and into typing and forget about the time. Remember to take breaks.
9. If you feeling uninspired or you're not enjoying blogging take a break.
10. It's okay to not set targets, e.g. to publish 2 posts a week every week of the year. Be realistic, and if you miss a whole month that's fine.
11. Don't just blog about health and disability, this may be your main focus but don't let it take over. Your blog about your and your life and there is more to you than just your illness. Write about your hobbies, days out and other fun things. I've done posts for 'Love your Pet Day' for example.
12. Remember to look after you and your health first.

Meeting with the local MP

Yesterday myself and my nurse from my care agency met with our local MP. I wasn't sure what to expect as a) I'd never met with and MP before and b) I felt there wasn't much else that could be done and that I exhausted all options.

Melanie Onn was lovely, she was very understanding and I felt that she really listened to me. I explained to her about some of my concerns, e.g. being alone during the day having multiple seizures and other aspects of my illnesses and symptoms e.g. POTS episodes, dislocations/subluxations, falls, incontinence etc. I also spoke to her about the lack of communication between my care in London and my GP/local care. I expressed that I wanted to live on my own with a care package of support. Melanie was really onboard with how I should be able to live a "normal" 26 year old life and that I should be allowed to use care funding for fun things as well as that actual care side of things and be able to live independently and safely. My nurse and I also shared how difficult I find it to manage my health and then on top of that I have all the appointments and emailing and telephoning act.

We also spoke about the extra costs: home care, taxi's, extra money for food and heating (the heating element I don't get an extra allowance during the winter like all older people get [whether they need it or not, but hays a frustration or another day]), any aids I need that the NHS don't provide etc. Literally at the end of the 4 weeks I have next to noting lift of my PIP and I pay for as much home care as I can but it's still no way near enough and there's no way I can move into an adapted property of my own and pay privately for the home care I'd need.

Also I explained about Leeds and how the CCG was only holding the funding for  months which I'm concerned about. One of the things Melanine is going to contact to CCG try and do is extend that.

My memory is terrible; I can't remember to outcome exactly but I think Melanie is going to investigate into some things like what am I no longer in the catchment area for the Complex Care Team, contact the CCG, my GP practice, mental health team and adult social care.

Hopefully they will send me an email or letter with a summary of what we discussed and something positive will come the meeting.

It was really good to have my nurse there for support with me as she's helped me a lot and attended a lot of meeting with me, or on my behalf and done a lot of advocating and chasing up for me.

What is a Changing Places - Changing Places Awareness Day 2019

Example of a Changing Places facility

About Changing Places

The Changing Places campaign officially started in July 2006. In celebration of this the Changing Places Consortium decided to make the 19th of July an annual awareness day for the campaign and for raising awareness of Changing Places - educating people what they are any why they are essential for so many disabled children and adults in the UK, but also worldwide. Changing Places Day is also about celebrating the Changing Places campaign and what it has done over the years.

"Many people don’t give visiting public buildings a second thought. But some disabled people are unable to takepart in activities many take for granted because standard accessible toilets do not meet their needs – or the needs of their carers and families.Imagine having to change your loved one or someone you care for on a public toilet oor. This just isn’t acceptable. But it’s a reality many have to face daily because they have no choice." - Changing Places, Changing Lives

What are Changing Places?

Changing Places have addition facilities to meet an individual's needs including facilities that could include: 

• A bigger room to allow several carers into the room alongside wheelchairs and equipment
• Centrally placed toilet with space either side for carer or for easier transferring
• Plenty of grab rails
• A hoist (either a portable hoist or a track ceiling hoist), privacy screens, a height adjustable adult size changing bench
• Wide tear-off paper roll to cover the bench
• A height adjustable sink
• A shower
• Large clinical waste bins
• Emergency red cords
• A non-slip floor
• A safe and clean environment

Who benefits from Changing Places?

Standard accessible toilets are fine for some disabled people, but not all.

Changing Places are essential facilities for over 240,000 children and adults in the UK. This may include people muscle-wasting conditions, motor-neurone disease, neurological disorders, spinal cord injuries, multiple sclerosis, severe learning disabilities, cerebral palsy, acquired brain injuries, spina bifida, strokes and other physical disabilities.

Why are Changing Places so important?

Knowing there is a Ching Place facility makes it easier for people and their carers and family to plan leaving the house, whether this is to attend a hospital appointment, run errands or have a fund day out.

"Standard accessible toilets (or "disabled toilets") do not provide changing benches or hoists and most are too small to accommodate more than one person. Without Changing Places toilets, the person with disabilities is put at risk, and families are forced to risk their own health and safety by changing their loved one on a toilet floor. This is dangerous, unhygienic and undignified." - Changing Places

Why we need more Changing Places

In the UK there is a growing need for more Changing Places and there are simply not enough and often it's a postcode lottery as to where you live as to how many there are in your local area.

The Changing Places campaign has and is being very successful in getting more Changing Places facilities installed across the country. It is still not mandatory for Changing Places to be installed in public buildings and spaces, but the Changing Places campaign is working on this to make it a mandatory requirement under Building Regulation for all public spaces - shopping centres, leisure venues, hospitals, transport hubs like bus and train stations, motorway serves and airports.

How can I find out where my nearest Changing Place is located?

On the Changing Places website there is a map of all the nearby Changing Places to where you are. 

You can also plan a route and it will show you where all the Changing Places are located along you route.

⇨ UK Toilet Map

You can also find Mobile Changing Places which can be hired for events.

Also, if you come across a Changing Place which is not on the map you can inform the Changing Places campaign so they can upload it to the map.

The map also gives details of some locations as to what facilities that particular Changing Place has.

References:

• Changing Places website
• Changing Places, Changing Lives
• Changing Places Toilets: Estimates of potential users

Guinea Pig Appreciation Day 2019

Yep you heard it, today is guinea pig appreciation day so here's a post for you Flop.

Flop is my guinea pig. We used to look after him and his brother Flip (but Flip is no longer with us ☹)  but then Flop's owners got a dog who didn't get on well with Flop so we got asked if we wanted to adopt Flop.

Flop loves his veg. He has a little alarm clock and he starts weaking around 3pm for his fresh veg. I like how each day he had is different favourite like one day you could give him lettuce and cucumber and he'll go for the cucumber first then the next day you'll give him the same and he'll prefer the lettuce. He also loves munching on the grass. When you go and put him onto the grass he'll be leaning over your hand eating the grass before you manage to put him down! He also love his herb mix that I add into his dried pellet food. Like grass he'll be trying to eat it out my hand before I can put it in his bowl. And talking of his bowl he loves to drag it into into his house.

Flop also loves his time out of the cage. When you get him out for a cuddle he'll either splat himself out inbetween your legs or burrow himself into your arm and he'll be making little happy noises. He also likes having a run around the floor in the kitchen/diner floor.

He has a bit of an ASBO, usually for wrecking his house and for chewing newspaper, especially at mealtimes which my step-mum hates the sound of. When he's been cleaned out and put back into his cage he likes to have a mad 360º run around his cage and move everything around.

I love Flop so much. He's very calming. When I'm getting stressed, having a cuddle with him and hearing him chatting away really calms me down and I love all his quirks, even the annoying ones.

The Medical and Social Models of Disability

The Medical Model of Disability

The medical model of disability holds the view that people are disabled by their impairment (e.g. being a paraplegic or blindness); it looks at what is "wrong" with the person and not what the person needs. 
The medical model traditionally sees that if he impairment or illness/conditions was to be cured disabled people would fit back into society and that society doesn't have to change or accommodate for disabled people.

• Forexample of a wheelchair user is unable to get into a building because it has steps the problems is seen that it because the person is a wheelchair user, not the fact that there is no ramp or lift.

One of the big flaws with the medical model is the is creates low expectation and leads to disabled people losing their independence, choices and control over their lives.

The medical model doesn't really work for many disabled people as many people's disabilities or chronic illnesses cannot be cured that they will also be 'disabled people'. If they cannot access pubic services, education, places of work and other venues this has a huge impact on their ability to access equality opportunity and it affects their quality of life.

Looking back through history disabled people where sent to special schools or long term residential care facilities which where often very medicalised. This places focus on the person's impairment or disability and how it can be minimised; it doesn't help the become part of society, or for the general public on how to include disabled people.

The Social Model

Many more people and organisations are now using the social model of disability.

   

(For film transcript of Scope's video click ⇨ here)

The social model of disability was developed by disabled people. It holds the view that individuals are not disabled by their impairment (e.g. being Deaf or having autism) but by society's failure to take a disabled person's individual needs into account, such as when designing a new building and ensuring things like steps free access, signing in alternative formats etc.

"Being Disabled is part of the normal spectrum of human life: society must expect Disabled people to be there and include us." - ALLFIE

The model is focussed around the belief that people are disabled by barriers in society rather than by their health condition/illness.

The social model states that people become disabled because of barriers in society and not by their impairment, disability or health condition.

Barriers could be physical should a building not having a ramp and full wheelchair access, or a service not having a textphone number. Another barrier could be caused by a person's attitude towards difference, such as assuming that a person with a visual impairment cannot do anything for themselves.

Some of the different ways the Social Model see that individuals are disabled by society are:

• Physical barriers
• Prejudice
• Labelling and stereotyping
• Ignorance
• Limited financial independence
• Not having information in alternative formats

The social model helps people to recognise the barriers in society that make life harder for disabled people; removing these barriers creates better equality and offers disabled people more independence, opportunities, choice and control.

"If modern life was set up in a way that was accessible for people with disabilities then they would ne be excluded or restricted. The distinction is made between 'impairments', which are that individual problems which may prevent people from doing something, and 'disability', which is the additional disadvantage vested by society which treats these 'impairments' as abnormal, thus unnecessarily excluding these people from full participation in society." - Mental Health Foundation

The social model of disability works much better for disabled people compared to the medical model as it means that disabled people can have full access to a wide range of facilities including public services like libraries, hospitals, leisure centres, cinemas, retail shops etc, as well as education and work and have just as much equal access and opportunities as non-disabled people and be able to live equal lives.

Examples of the Social Model of Disability in Action:

• A child with a visual impairment wants to be part of the book club at school. The Social Model's solution would be to make the book available in a format best suited for the child's needs, whether it a be in large print, braille or audio format.
• A wheelchair user wants to access the public library but there are step into the building and stairs inside. The Social Model would ensure that there is ramp access into the building and inside there are lifts to other floors and that an accessible toilet is available. They would also have a lowered service counter and have staff to assist individuals to reach for items on shelves.
• A doctors surgery has a new person sign up as a patient; this person is profoundly Deaf and using BSL to communicate. The Social Model would ensure that there is a textphone system installed so the individual can independently make appointments and the GP Practise also ensures that there is a BSL interpreter is available whenever the individual has an appointment. 

Changing Attitudes Towards Disabled People

Negative attitudes towards disabled people which are based on prejudice or stereotyping can stop disabled people from having equal opportunities in life - this is sometimes referred to as 'disabilism'.

Examples of negative attitudes include assuming thoughts that disabled people can't:

• Be in employment
• Be in further or higher education
• Live an independent life
• Have a family
• Advocate for themselves
• Individual can do little for themselves and must have a carer with them at all times

References

• Disability Nottinghamshire: The Social Model vs The Medical Model of Disability
• Mental Health Foundation: Social Model of Disability
• Scope: The Social Model of Disability
• The Alliance for Inclusive Education: The Medical Model of Disability
• The Alliance for Inclusive Education: The Social Model of Disability