Equipement

Equipement helps me to live my life. It can be disability related. A wheelchair is a disability product for example. My smart heating is a prime example of non-disability specific piece of equipement that makes my life easier.

Are migraines a disability?

Are migraines a disability? In my experience yes!

inclusivelivingconcepts was abandoned because, at the end of April, I started having horrific migraines which meant that until recently I haven’t been able to do anything but curl up and pray for the pain to stop. Very dramatic, but unfortunately true as many of the disability community will agree. Whether it is classed as a disability or not officially is down to how affected you are. In my case, pain like that is temporary. I couldn’t do anything sometimes as I couldn’t see from my left eye.

Are migraines disabling?

Professor Peter Goadsby at Kings College London and the trustee of the migraine trust describes a migraine as,

“an inherited tendency to have headaches with sensory disturbance. It’s an instability in the way the brain deals with incoming sensory information, and that instability can become influenced by physiological changes like sleep, exercise and hunger.”

Taking this definition, the answer to the question, are migraines a disability is also a resounding yes as it is described as an instability in the brain.

An individual cannot help the fact that they are prone to migraines, but if specific triggers are realised, they may be avoided. An example is watching too much TV or reading without glasses if needed. Some people do not have triggers but a big one for me is stress and overexertion.

Substandard Care causes massive stress!

My posts have complained about the care system since I started this blog. People who actually care and who want to do the job are few and far between. Why do people apply for jobs and then just disappear without saying anything? I’ve had it with interviews too, people say they’ll turn up and then don’t.

I don’t understand why people don’t do what they say they will. I’m starting to wonder if I will find a team of people that I’m comfortable with but am trying to stay positive and not take it personally. This stress causes my muscles to tense up even more than usual. This is the double whammy of my Cerebral Palsy increasing the chance that I will experience a debilitating migraine.

Are migraines a disability that qualifies a person for benefits?

Yes, if your migraines are likely to last over twelve months and they prevent you from working. It all depends on how a migraine affects an individual and whether treatments are effective.

Medication for migraines

The medical profession’s attitude towards medication, in general, has shocked me! I don’t like taking more medication than I need but I couldn’t stand the agony of my migraines! I take some tablets regularly due to my Cerebral Palsy. Baclofen is the main one since I hurt my back trying to live independently, (carer free,) without having access to the right help.

I rang my GP as I couldn’t cope with the pain. I find getting access to a doctor really difficult since the pandemic.

When I did get to speak to a doctor I was told I could take Naproxen, Codine, Paracetamol, Baclofen and Diazepam together if need be! This was a big difference from the cautionary tale I usually got. Diazepam is the only drug doctors didn’t want me taking long-term. Thankfully I have now come off all non-daily tablets. I find it crazy that society would rather I pill pop rather than get the treatment I need.

It is now July 2023 and I have just got to the top of the physiotherapy waiting list, received an appointment for my local pain clinic and have an OT that I can contact. I first wrote this post in October 2022. Maybe this is why pills are prescribed, doctors know that it takes ages to gain access to the appointments needed. It’s taken two years for me to get these appointments.

Migraine Medication

Different types of migraines

According to the NHS, there are three categories of migraines. To date, I have always had a migraine with aura. Aura in this context means symptoms. The three main types of migraine are:

  • Migraine without aura which has no warning signs at all.
  • Migraine with aura. This has warning signs like feeling numb and tingly, seeing lines in your vision, feeling dizzy or having difficulty speaking.
  • Migraine aura without headache, aka the silent migraine. This is where you get the symptoms above but without the headache.

Treatments for Migraines

Apart from painkillers, there are medicines called triptans which affect the serotonin in the brain to relieve the symptoms of a migraine. There are different types of these medicines sumatriptan is often recommended, according to NICE and works to narrow the blood vessels in the brain. This is based on the theory that migraines are caused when the blood vessels become too wide.

Medicines like cyclizine are used to help stop an individual from feeling or being sick. Not only can the effects of a migraine cause sickness but triptans can cause this effect too. Changes to lifestyle are recommended, depending on what triggers an individual. Relaxation techniques and acupuncture may also be an option.

For more information and help with migraines visit The Migraine Trust.

How does my disability affect health and wellbeing?

Mental wellbeing

I’ve had a lot of ups and downs mostly due to the stress of having to recruit Personal Assistants and contemplating moving out of my parent’s house for what will be the 6th time. My wellbeing has improved as I now have a solicitor to assist me in fighting for my rights.

Mental health therapy has been really hard to access for me. I don’t know if this is because of my disability, many private services I’ve asked about don’t have wheelchair access. Waiting times within the NHS are horribly long for anyone at the moment, even if there are no additional needs to worry about.

Needing someone to assist me with virtually every task negatively impacts my mental health but I’m hopeful that with the right support in place, my mental wellbeing will be boosted.

I started inclusivelivingconcepts to help me work through what is going on in my life. Thinking that writing about my experiences would not only help others but also improve my own mental health as well.

I also attend an online mental health platform called SpokzPeople. I wanted to write a post for Mental Health Awareness Day but was too overwhelmed to post anything. Mental health is important and not just one day a year. Wellbeing is becoming more prominently talked about. Poor mental health can be triggered by both big and small situations.

Talk to someone if you are feeling low or struggling no matter what the reason. See the list of helplines below.

This picture shows a black telephone handset with a black circle around it. The background between the phone and circle is white

Helplines:

There are accessible options if you find using a phone inaccessible due to a disability. The info below was taken from the Mind website:

Samaritans

To talk about anything that is upsetting you, you can contact Samaritans 24 hours a day, 365 days a year. You can call 116 123 (free from any phone), email jo@samaritans.org or visit some branches in person. You can also call the Samaritans Welsh Language Line on 0808 164 0123 (7 pm–11 pm every day).

SANEline

If you’re experiencing a mental health problem or supporting someone else, you can call SANEline on 0300 304 7000 (4.30 pm–10.30 pm every day).

National Suicide Prevention Helpline UK

Offers a supportive listening service to anyone with thoughts of suicide. You can call the National Suicide Prevention Helpline UK on 0800 689 5652 (6 pm to midnight every day).

Campaign Against Living Miserably (CALM)

You can call the CALM on 0800 58 58 58 (5 pm–midnight every day) if you are struggling and need to talk. Or if you prefer not to speak on the phone, you could try the CALM webchat service.

Shout 

If you would prefer not to talk but want some mental health support, you could text SHOUT to 85258. Shout offers a confidential 24/7 text service providing support if you are in crisis and need immediate help.

The Mix

If you’re under 25, you can call The Mix on 0808 808 4994 (3 pm–midnight every day), request support by email using this form on The Mix website or use their crisis text messenger service.

Papyrus HOPELINEUK

If you’re under 35 and struggling with suicidal feelings, or concerned about a young person who might be struggling, you can call Papyrus HOPELINEUK on 0800 068 4141 (24 hours, 7 days a week), email pat@papyrus-uk.org or text 07786 209 697.

Nightline

If you’re a student, you can look on the Nightline website to see if your university or college offers a night-time listening service. Nightline phone operators are all students too.

Switchboard

If you identify as gay, lesbian, bisexual or transgender, you can call Switchboard on 0300 330 0630 (10 am–10 pm every day), email chris@switchboard.lgbt or use their webchat service. Phone operators all identify as LGBT+.

C.A.L.L.

If you live in Wales, you can call the Community Advice and Listening Line (C.A.L.L.) on 0800 132 737 (open 24/7) or you can text ‘help’ followed by a question to 81066.

Helplines Partnership

For more options, visit the Helplines Partnership website for a directory of UK helplines. Mind’s Infoline can also help you find services that can support you. If you’re outside the UK, the Befrienders Worldwide website has a tool to search by country for emotional support helplines around the world.

Physical wellbeing

At the start of the first lockdown in 2020, I had so many plans for the upkeep of my wellbeing, so many tours and shows to watch online and accessible fitness classes for disabled people were being launched. Then I caught COVID-19 and it all went to hell.

One of the main things I realised after venturing outside again was how weak I was. It wasn’t all to do with being ill. I’d spent the best part of a year in a home where everything was adapted to my needs. This meant I wasn’t struggling to transfer. Not needing to access anywhere but my home was great at the time and a boost to my mental and physical health. Most of my pain disappeared but without the daily struggle my body got lazy and I’m still not back to how I was.

In August 2020, I applied for and was given some resistance bands. The scheme run by Wheelpower is now open again. If successful they will post the bands to your home and their website has lots of videos with classes and ideas of how to use them. I still don’t use them regularly but that’s down to my willpower, I am using them more now.

Wellbeing resistance-bands

I’m now attending physio sessions so hopefully this will help me physically. Those of you who follow me will know I already have some fetching new boots and I’ve tried a very expensive wheelchair that holds me in a great position and eliminates my back pain.

Dancing with Motionhouse

Our first performance of Wondrous Stories was on Thursday 17th March, as part of the Birmingham 2022 Festival. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories performance here: https://www.youtube.com/watch?v=SGTukQOMTkI

Wheelchairs and Wellbeing

Without my wheelchair, my wellbeing would suffer. My wheelchair is my legs and my independence, which is why I’m still searching for a suitable second chair. The Q700UP I trialled at my physio session would be amazing but it is very expensive! More on this when I have more time, with pictures I promise.

Journalism

I’m still studying for my certificate in journalism under the ADJ but due to the above, I haven’t managed to progress much. I’m really enjoying the course so far and thankful that the tutors and organisers are understanding when life gets in the way. I hope to complete this qualification before Christmas. Excuse me for mentioning that holiday before November!

Assistance Dog

I’ve always loved dogs. They make me smile from ear to ear! It’s always been a goal of mine to have a four-legged PA and thanks to Canine Partners it’ll happen. Canine Partners train assistance dogs for disabled people. The main tasks for me will be opening/closing doors, picking up anything I drop and assisting me with my coat. I’m hopeful this will mean I can leave the house independently. This will help my wellbeing massively both mentally and physically if I can do things on my own without asking for human help. If only dogs had opposable thumbs… 😂

Collective voices create change and better wellbeing for all

Lastly, I’m a member of several survey and disability groups that ask my opinion on different things, including access and disability. A well-known company is Open Inclusion. There is also The Diversity Standards Collective which pays £10 per survey they send you. I’m not being paid to mention these and there may be others. These are just the companies I am part of and I find it interesting to share my views and hear of others’ experiences as well. The more people, both those with and without a disability provide feedback about products and services the more inclusive the world will be.

If you have any questions or comments about inclusivelivingconcepts please get in touch. I would love to hear from you.

Trabasack-Mini

Mini and Mini Connect Trabasack Review

As promised, here is my review of the Trabasack Mini and the Trabasack Mini Connect products. These two have been sent free for me to review. As a long-time user of Trabasack Products, I will give my honest opinions of these products. I use Trabasack as I have poor dexterity and spasms due to my disability. Trabasack enables me to access food and drink conveniently, without spilling anything.

How are these products different to the Trabasack Curve?

In my Trabasack Curve review, I focused on the differences between the wipe-clean, leather-look version of the Curve and briefly explained why I chose the non-Connect, velcro version. The main difference between the Mini and the Curve products is shape and size. Whether you choose the Connect version of either product or not the Mini is square and slightly smaller than the Curve.

The beanbag inside both Mini Models of the Trabasack is also square and unlike the Curve, it is a tight squeeze to fit more than one beanbag inside a Trabasack Mini. Having said that I haven’t noticed any instability that has made me think of adding an extra beanbag. It is only because I owned the Curve first that the option occurred to me. The smaller size means that the bag fits nicely on my lap and the beanbag covers more space. This makes both Mini products very sturdy and comfortable to use.

Trabasack Mini Beanbag

What’s included?

Both Mini versions come with an instruction booklet, and two straps, one short, and one long. Both have six D-rings each and both come with two ring pull zips. The only difference between them is the tray surface.

Benefits of Mini Connect Velcro

The main benefit of the Mini Connect version is that Velcro sticks to it. This means that objects stay secure on the tray. Having items stay put can be useful for anybody but particularly for disabled people. This is because when we drop things it can be difficult, if not impossible to pick them up. The mini Connect can help ensure that items stay within easy reach which makes them easy to access.

TV Remote held by MediaMount

Trabasack MediaMount

If you are able to view the image above you will see that my TV remote has something wrapped around it. This long accessory, sold by Trabasack is called a MediaMount. The MediaMount is basically a long strip of soft material with velcro all along the underside with two loops at the end to assist people with limited dexterity to grip it. The design means that it sticks to itself and to the Mini connect. This means it can hold items securely and at virtually any angle you want, again, making accessing items easier.

Cup held with MediaMount on a Mini Connect Trabasack

Mini Connect and iPad

In my previous review of the Trabasack Curve, I mentioned how I had damaged an iPad case by putting too much velcro on it when placing my iPad onto my Trabasack. This time I was more careful…

iPad with Velcro
As you can see you don’t need a lot of Velcro 🙂

This small amount of velcro will keep my iPad secure on my lap but enable me to take it off easily when I want to. Trabasack also sell hook tape so if you need some extra velcro they have you covered. You get two strips in a pack and cut them to any size you need.

iPad stuck to Mini Connect Trabasack with Velcro
This photo shows my iPad on the Mini Connect which is attached to my waist.

This position is very comfortable for watching videos or reading emails.

Trabasack Mini

The main selling point of the Mini version vs Mini Connect is that the surface is wipe-clean. Which one you choose will depend on whether you want to use velcro with your Trabasack or not. Having said that the MediaMount does work with the non-Connect version of the Trabasack Mini. The accessory will still hold things in place it just won’t stick items to the tray surface.

The photo on the left shows the MediaMount wrapped around a cup that is resting on the Trabasack Mini. The photo on the right shows the MediaMount curled around itself with a hole in the middle. This is an excellent position for my iPhone and props it upright. This makes it great for video calling. Unfortunately, I couldn’t show this as I needed my phone to take the photos. The pitfalls of having a device that does everything!

Reading

Another thing I use the Trabasack for is reading. I have to say I prefer the Mini version of the product for this over the Curve as its smaller size and square shape is more comfortable for books.

Book resting on Mini Connect

The Mini ensures that I don’t feel the heavy weight of even this big book on my legs! I do slightly prefer the Mini Connect over the Mini in this instance as I can stick the MediaMount onto the Connect Surface to prop the book up at a more comfortable reading angle. I haven’t yet resorted to putting velcro on my books! Thankfully Trabasack products are so stable that I don’t have to!

Conclusion

Both of the Trabasack Mini versions are great. As I use all the products more and more I’m tending to use the Curve as a meal tray and for laptop use and the Mini for everything else. I have got really attached to the Mini Connect with the MediaMount. The main reason I always brought the Trabasack Curve, was because of the bigger lip around the edge. Now with the MediaMount, I have the smaller form factor and a bigger edge all the way around.

Mini Connect on my lap with the MediaMount around the edge

Despite its smaller size, it will still comfortably fit my 13inch Macbook Pro inside it.

Trabasack-Mini-with-Laptop-inside

I think Trabasack says Laptops up to 14 inches for the Curve and Mini Models and up to 17 inches for the Trabasack Max. Whichever model you choose you won’t be disappointed.

I hope you enjoyed this review. It’s a 5 star product that has earned it’s place on inclusivelivingconcepts. Please get in touch if you’d like to ask me any questions regarding these or any other products I use.

Accessible Rooms: How To Make Them More Accessible

Due to a certain well-known virus, most of us aren’t going anywhere at the moment, but I said I’d write an accessible rooms post on inclusivelivingconcepts before the COVID-19 madness started, and it occurred to me that the house arrest many are experiencing at the moment is a good opportunity to get organised for our next accessible getaway.

Questions to ask before you book your accessible accommodation.

I’ve found the best approach is to think about what would make your stay IMPOSSIBLE and then structure your questions around making sure the impossible can’t happen. The obvious access needed for a wheelchair user is steps. I always specify the exact thing I need or don’t need to make sure I can access everything.

Using the example of steps, the question I would ask is, does your accommodation have any steps? The keyword here is any. If they say no, I follow up with none once inside. The reason for this is I have often been told that the entrance has no steps but that the bathroom is split level. People tend to think about entrances when you ask any access question but not beyond that!

Blue door
Blue Door Entrance

My Top 10 Accessibility Questions:

1) Does your accommodation have any steps?

This is a deal-breaker for me unless there are lifts. Hotels often have alternative access, but If I want to book a holiday cottage, for example, it has to be wheelchair accessible. Steps may not be a barrier for you. Your insurmountable barrier may be that you need your accommodation to have hearing loops etc. Personalise this top ten to your circumstances.

2) If there are steps, are there lifts/ramps available to get to where I want to go?

I ask this because some people see in black and white, and it might not occur to them that there are steps at the front but step-free access at another entrance. Finding this out means I may have more choices about where to stay.

3) What is the width of your doorways?

This question is one I don’t have to ask as I’m lucky enough that my biggest piece of equipment (My PowerChair) fits through standard doorways, but it is a close thing sometimes! To be safe, measure your chair from the widest point to the widest point. Then you can say I need doorways to be no narrower than XYZ. Please note: If you have a piece of equipment bigger than a wheelchair, e.g. a hoist, measure that instead. Bit obvious but still worth pointing out, you want the doorway/s to admit you and anything else you might need.

4) Is there an accessible bathroom with a wet room?

I need a wet room, as I can’t access a bath or any bathing setup that isn’t flat. Obviously, you could change this to whatever setup you prefer.

5) Are there grab bars next to the toilet, fixed to the wall?

Again, this is very specific to me. I cannot transfer without static bars that are fixed to the wall. Fold-up ones lift up as I stand, I’d be there all day! You might need fold-up bars or no bars at all so that a side transfer is possible or enough space around the toilet to use a hoist. If you’re able enough that a toilet is a toilet, then leave this out.

6) Is there a shower seat fixed to the wall?

A fixed shower seat is the set-up I find most accessible. Hiring a shower chair is an expense, and they are often too high for me to transfer into. There are companies that will lend you equipment, and many deliver to your accommodation, for a fee of course.

You may be wondering why this question didn’t follow the wet room question. The reason is if there isn’t a wet room I can’t stay there, ditto if I can’t access a toilet. Given that, the specifics of the shower are saved until I’ve ascertained the bathroom and toilet space are accessible for me.

7) How high is the bed?

My biggest issue isn’t that I use a wheelchair. It’s my height, together with my disability. I’m 4.8ft, just short enough to make an already challenging transfer that much more difficult! I, therefore, need a low bed. You may need a high bed to make it easier to get out of it in the morning. It’s also worth asking if there is space under the bed itself. If you travel with a hoist or hire one, the last thing you want to discover is that the hoist cannot get close enough to the bed!

8) Are the light switches near the bed?

If you’re like me, you might need assistance in the night, sometimes, however, I just want to roll over and check the time without disturbing people. If the light switch isn’t reachable from the bed, this isn’t possible. It may sound trivial, but I’m no good at routing around in the dark! It also makes things easier and safer when I do need assistance.

9) Do you have adjoining rooms?

This question is more about hotel rooms and is related to the fact that I need assistance. If this doesn’t apply, leave it out, but if I need anything at stupid o’clock, my family or my PAs have the luxury of coming straight to me and not having the honour of traipsing a public area in their PJs! If you are renting a property, then this isn’t needed.

10) Can you email me photos of the property/room type that I’m looking at booking, please?

I will never go anywhere again without first seeing pictures of where I’m staying and the layout. Even after asking all these questions, things can be topsy-turvy upon arrival. Even with the best will in the world, people misunderstand and, in some cases, give completely the wrong information!

Access gone wrong!

Prior to my stay in London, I asked everything I’ve outlined here and received satisfactory answers. Upon arrival, the shower seat was a portable seat that hung over a static grab bar and was VERY shallow. I eventually got my money back as I had one shower over three days, which nearly ended with me and my PA on the floor as the seat wasn’t stable! I did, on this occasion, request pictures, but they weren’t clear, and I took a chance. Businesses should be happy to provide clear images of either where you are staying or a comparable room/building. If they are not, find somewhere more helpful that will accommodate you.

Camera clipart
Clip Art of A Camera

Products to help make your accommodation more accessible

Having found somewhere accessible to stay and phoned the business to ask about access requirements, it’s quite likely that the place you want to stay isn’t perfect and not as straightforward as it would be if you were in your own home. Instead of not going anywhere and staying home (sound familiar?), there are products out there designed to make accessible rooms more accessible to you.

Portable hoist

Everybody is unique, and because we are all unique, our version of accessible is different. What works for one person may not work for another. Some people cannot manage without a hoist to transfer from A to B. This doesn’t have to mean that travel is out of the question. If you are hoisted, chances are, to save space and for convenience, you have a ceiling track in your home. Unfortunately, this isn’t portable. There are, however, portable hoists available for purchase or hire. See the image below. If hiring a hoist, always check the dimensions with the company to be sure that it will fit through doorways.

Hoist
Picture Of A Portable Hoist

No hoist is small by any means, but you can see that the one pictured above does fold and can be moved about. For the purposes of this blog post, all images are taken from mobility websites. I’m not endorsing any particular product, just giving some idea of what’s available. If you use something that I haven’t included in this post. Please get in touch and tell me about it.

Patient transfer aids

If you don’t need a hoist but need some help transferring, there are many disability aids available. You do need to be able to weight bear to use these.

Patient Turner
Patient Turner

A patient turner, like the picture above, is a device that assists you in transferring without putting a strain on the person assisting you. To use; stand on the disc with knees against the pads, holding onto the bar at the top. The bar can also be used to pull yourself up into a standing position, and the patient turner can be wheeled short distances by your PA/carer. I’m not sure how portable they are in practice, but the top bar can be unscrewed for transport on most models.

Patient turntable

Patient turntable
Turntable

The image above is of a patient turntable, a more portable device than the patient turner. The disc turns around, enabling an individual to be assisted from A to B without having to struggle to move their feet and turn their body. To use; stand on the disc, and, with the help of someone else, the movement to turn around is initiated, and the disc turns. This is what I use to get from my wheelchair to bed. By positioning my wheelchair next to the bed, disc on the floor, under my feet, I can stand (with the help of my PA.) The disc turns, and my legs go from being in front of my wheelchair to in front of the bed or vice versa, A 90-degree turn has been achieved, and all I have to do is stand, very portable.

Transfer/Bath Step

I use a bath step because it is very rare that furniture like beds and chairs are low enough for me to transfer onto. Steps like this are sturdy and non-slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or take away layers as required. It is very useful and, in my case, means I can stay in places where otherwise I would need a specialist bed that is height adjustable.

Transfer/Bath Step
Transfer/Bath Step

Furniture blocks

These blocks come in different heights and in rectangle, square or round shapes. They can be used to make furniture higher, either for transfers or so a hoist can be slid underneath, e.g. a bed. Hotel staff, if asked, will position the feet for you, but the bed, chair, etc., will have to have feet of their own that can be encompassed by the blocks. Again, it is something simple that turns the inaccessible accessible. Many are also stackable for storage.

Portable Ramps

Depending on what steps and access are available, a portable ramp may be a good investment. These can be expensive, but if you’re patient, some good bargains can be found online. I bought a 3ft ramp off eBay last year for £15. It lives in my car boot, so I have it with me when I need it.

Picture Of A Portable Ramp
Picture Of A Portable Ramp

Grab bars

If grab bars have to be in a certain place to be accessible, suction grab bars can make the difference between not being able to stay somewhere and managing. They need to be fixed to the wall by someone with a lot of strength, and having done so, weight should be put through the bar by someone who can cope if the bar falls off the wall. Only then should the person requiring the bar start to use it. Prices start from under £10 to over £100. Some are better at sticking to walls than others. The ones I use are called Mobeli, expensive but worth it.

Grab bar
Grab Bar

Shower seats

If you need something to sit on whilst in the shower, there are plenty of portable seat options, like the one below. However, you do need a degree of balance, which I don’t possess. That’s why I always ask if a shower has a seat attached to the wall. This means I can lean back on the wall for balance and affix a portable grab bar next to me to hold onto. I use a wheeled shower chair at home, but it’s definitely not portable. There are also stools, some of which can be folded. These take up less room in luggage but have no back.

Portable shower seat
Portable Shower Seat

I hope you have enjoyed reading this post and are inspired to begin planning your trips away, ready for when this crisis is over. For now, take care of yourselves. Stay home and stay safe!

Look out for my post: Self-isolation Activities.

Independence with Disability

Independence means choice and control. It means access to the support that is needed to live. According to the Cambridge dictionary independence is: the state of wanting or being able to do things for yourself and make your own decisions without help or influence from other people. I’m not able to physically manage without help from another person but I can still make all my decisons. To be independent I need people there to support me.

Fighting for independence

The OT assessment in December 2019 has changed nothing! Since publishing my last post, my PA had to leave her job due to health reasons. Two days later my Social Worker emailed me to say the Direct Payments Team were enquiring whether my payments should be suspended as I no longer have any carers! This response upset me and demonstrates perfectly what is wrong with the current system. Instead of being offered support to find a PA and therefore, continue my independence, my needs were being questioned!

I explained that I needed the money available to be able to employ replacements, not to mention to pay HMRC. Thankfully, after a few more emails back and forth Social Services decided things could be left as they are.

Do I expect too much in thinking that that should’ve been obvious without me pointing it out?

Direct Payment budgets are hard-won and everyone I know would gladly give up the money for care in exchange for not actually needing it in the first place.

This struggle is what inspired me to start inclusivelivingconcepts as I know I’m not the only one. I’ve been fighting for my independence for the last ten years, and the fight is wearing thin and taking its toll!

Independence

Independence to me means being able to live without the assistance of my parents. The dream of being able to do everything without outside help is not realistic or feasible. My plan was to get around the need for care assistants by installing ceiling track hoists all over my flat and hoisting myself everywhere. A good plan, in theory, brought on by my determination to have choice and flexibility in my life. In my determination, I pushed myself too far.

Pushing my limits

By pushing my limits I have permanently hurt my back and my neck, struggling as I did but I’m glad I tried. Without trying, I would never have discovered my limits, even if those limits had been increased by my actions. I’m not advocating that people push themselves to the limit, but for me, at the time, it was the right choice.

Exhausted without the correct support!

While living alone, I was exhausted by the time I was out of bed in the morning! Even if I had the energy to go out, I could only leave my flat for a couple of hours as my toilet was the only one I could use without help. By the time I moved back in with my parents, fourteen months later, I could barely sit up in my wheelchair and had to undergo over six months of physiotherapy to get me somewhere close to my normal functionality.

I still find the idea of needing someone with me to assist restrictive and would rather do things myself. When going through care assessments, I always find the process demeaning.

Lazy not disabled

The OT who visited recently seemed convinced that she could teach me to transfer independently, given enough time. Trying to keep calm, I commented that if she could do that, I’d buy her a box of chocolates and happily live my life.

Why do people look and see more ability than is there? Do they see ability or do they just see a care budget they have been told to cut?! I had enough motivation growing up to become self-sufficient if it were possible. People think I’ve just missed a trick, that I actually can do things, I just don’t know-how. Am I alone in this? Stating I’m more able just delays the evitable which may save money in the short term but it may cost more longterm as I cannot function alone.

Upset figure

Disability equipment concepts to increase independence

There are many concepts and products that have been developed to increase the independence of ‘disabled’ people. Go into any disability shop or website and you will see countless aids designed for increasing independence that range from button hooks to bum wipers!

Wheelchairs focus on lack of leg and feet functionality but assume the rest works as it should. A good example is the video below that’s been appearing on Facebook for a number of years.

Video of a Wheelchair Concept

It’s great that people are thinking about access and recognise that barriers exist. The height of things, travelling and steps are very real obstacles that wheelchair users face daily.

Can you spot the first problem with this concept?

…How many of you go to bed fully dressed and ready for the day?

…How many of you can roll, either at all or whilst keeping your body in a perfectly straight line?

I don’t go to bed with my clothes on! When I roll over my head sometimes ends up on one side and my legs in another direction entirely! Never symmetrical!

Ok, so I’m nitpicking and personal care isn’t really addressed in these types of concepts but, if the chair was made, how would the owner get up, go to the bathroom and get ready for the day? A unique selling point for this product is that it lays flat for easy transfers but how are seated transfers catered for? While some practicalities have been thought about others have been ignored.

Questions figure

Current equipment

Hoists, (the current go-to for moving from A to B,) are great pieces of technology and mean that people can be transferred safely if they can’t move. However, even portable hoists aren’t very portable and certainly not designed for the user to use independently. Individuals who rely on a hoist are stuck if there isn’t one available.

I hope to help create a solution that is portable and can be operated solely by the user.

I’m nowhere near creating anything yet but I have ideas and I’m hoping that people reading this will want to get involved and bounce ideas around. Every wheelchair started off as a concept and we now have chairs that can climb stairs, albeit in a very wobbly way! Wheelchairs can now stand people up so why not a chair that can transfer someone from A to B?

These are my ideas of independence, what are yours?

Reviews

In this section of inclusivelivingconcepts, I will post reviews about the disability equipment I’ve used/currently use, venues I’ve visited, day trips, and shows I’ve been to. I hope you find them interesting and helpful. The reviews on this website are my opinion only.

Reviews can help promote independence

Independence is important to me therefore, I always aim to choose products that enhance my quality of life. This usually means that it is not a standard product as things have to be adapted for me to access most things. Reading product reviews and recommendations helps me choose which products to buy and gives me ideas for making life easier. I hope this category does the same for you.

What I look for when choosing products to enhance my life

The main thing I look for in products, whether they are disability products or not is how that product will enhance my life and, where applicable improve my access to the things that are important to me. Portability is also of great importance to me when purchasing items.

The main thing I look for in products, whether they are disability products or not is how that product will enhance my life and, where applicable improve my access to the things that are important to me. Portability is also of great importance to me when purchasing items. This is rare as disability equipment tends to be big and bulky. I often find that non-disability products, repurposed, work best. Read my article for some ideas.

Reviews of places I’ve been to

Reviews of places I’ve seen or stayed at will be largely based on my own access needs, but I will include other information if known. If you have a specific question you would like answered or would like me to review, please contact me.

error

Enjoy this blog? Please subscribe and share :)