Dear Prime Minister,
It is with deep concern that I am writing in regards to the discriminatory proposed changes to Personal Independence Payment (PIP) and other disability benefits. These changes have the potential to have a devastating impact on the lives of disabled individuals across the country and add to the stigma that disabled persons have to contend with.
The proposed changes, which include cuts to benefits and stricter eligibility criteria, are not only unjust but also a clear violation of the rights of disabled people. A fact that the United Nations has recently focused on. Many in the disabled community rely on these benefits to meet their basic needs and live with dignity. In too many cases the available benefits are not enough to cover necessities, a problem that is only growing due to the cost of living crisis. By cutting these benefits, the government is effectively pushing disabled individuals further into poverty and isolation.
It is important to remember that disability in any form is not a choice, and no one should be penalized for something that is beyond their control. No disabled person should have to fight for help, nor contend with the government bringing in further discriminatory and ableist measures. It is the responsibility of the government to provide support and resources to those who need it the most, not to further marginalize and discriminate against them.
I urge you to reconsider these proposed changes and instead focus on creating a fair and inclusive system that supports all individuals, regardless of their abilities. Focus on enabling companies to create more jobs, including remote work, that is accessible and accepting of disabled people; the current scheme does not do its job. Disabled individuals deserve to be treated with respect and dignity, to be enabled to live a life full of opportunities, and it is our duty as a society to ensure that they have the resources they need to thrive.
I may only be a voice in a sea but I urge you to work towards creating a more just and equitable system for all.
Sincerely,
Rebecca Tunstall
Tag: disabled
Accessibility in the home
Living with a disability can present its own set of challenges, especially when your living space is not adequately adapted to meet your needs. This was the reality for me until recently, when we finally had ramps installed at our house. The moment that I was able to independently navigate in and out of my home was truly emotional and empowering.
Living in a house that was not wheelchair accessible had been a source of great frustration and limitation for me. Simple tasks such as taking my kids to school or attending appointments required the assistance of another adult to help me transfer in and out of my wheelchair. This not only made me feel dependent on others, but also put me at risk for injuries, and resulted in several dislocations.
The lack of accessibility had reached a point where I rarely left the house, only venturing out once a week at most. However, everything changed when we moved over Easter and were given the go-ahead to make adaptations to our new home. The installation of ramps was the first step in creating a more accessible living space, and over the next year a through floor lift and wetroom will be added.
The addition of ramps has provided me with a newfound sense of independence, allowing me to easily come and go as I please. I am now able to take my children to school, attend author appearances, and engage in everyday activities that were once out of reach. The ramps have also improved my emotional well-being, by giving me a sense of normalcy and freedom that I had been missing.
The installation of ramps at our house may have seemed like a small and simple change, but its impact has been monumental. It has opened up a world of possibilities for me. I am excited for the future as we continue to make our home more accessible and inclusive.
Hospitals & Consent
Over the last few years I’ve not had the best experiences at my local hospital. I’ve gone in incredibly sick and been discharged in a worst state multiple times. It’s got to the point now where I have to know in myself that I can no longer cope at home before I will agree to go.
The other night after spending several hours vomiting uncontrollably, passing blood, and doubled up in pain so severe I was unable to talk through it or focus my partner rang an ambulance. I dislocate multiple times a day and live with organ prolapse, I’m good at handling pain but this was another level of hell.
The ambulance we would end up cancelling as it was several hours away and family could drop me there quicker. I was sat in my chair, throwing up, crying in pain and quite frankly not coping. A few hours into the wait I seized. I don’t remember this. The doctor the next day told me I’d managed to seize out my wheelchair onto the floor, they’d had to scoop me up and get me round to resus.
I can remember throughout the night they attempted multiple times to place a cannula but failed. I desperately needed meds and fluids, and asked for them to use an ultrasound machine and ideally a consultant as my veins are extremely hard to find but also blow very easily due to my Ehlers-Danlos syndrome. This request was ignored and they decided not to administer the fluids or meds I needed. I was there for over 12 hours. Eventually they decided to take blood from an artery by my groin. Again I requested an ultrasound and experienced Dr such as the anaesthetist on call (they are used to my veins and are patient) instead they pressed ahead blindly and painfully.
I’ll delve into this topic another time in more detail but please understand that a disabled person’s medical aids are an extension of themselves. You should never touch them without first gaining consent. While I was in the hospital I had the valve removed from my Cathater. They did not have my consent to do this. They had asked to attach a bag which was fine, I attach bags to the valve all the time. But I would never consent to the removal of the valve as then I would be on free flow which would cause horrific spasms as I have a neurogenic bladder. The valve is the only thing that helps manage these spasms. Yet it was taken off and binned without consent.
I was discharged that morning and handed a few days worth of the same antibiotics I had just finished and sent home. When my partner arrived in resus to collect me the first thing he asked was if I was well enough to go home. I shook my head but said nothing. Within an hour of being home my district nurses were calling another ambulance for me. My temp was 39.5, I couldn’t stop shaking and I was still in agony. There was a four hour wait and with how concerned my team were Damon loaded me back into the car.
This time they listened a bit better. We established that actually my bloods had shown a kidney infection and I needed a completely different set of antibiotics. But was once again sent home. Today I’ve hardly stayed awake. My other half stayed home to look after me and has had to wake me up for my nurses and meds. I’m exhausted, still with the raging temperature and just frustrated.
An Open Response to Sajid Javid
When I stumbled across the article in the Guardian during the early hours of Saturday morning I was horror struck. “Sajid Javid calls for patients to pay for GP and A&E visits” the bold headline all but shouted. The fear that boiled up instantly is one I imagine Sajid Javid is not familiar with. Fear of what might happen to you if you cannot access the medical help you need. A familiar fear. Rumours have circled for years that the Conservative government wants the NHS to fail so they justify privatising it. It’s a statement we’ve all heard, and although it’s one I’ve always dismissed as a rumour it’s still brought that stomach churning fear with it.
Could I afford my life changing treatment if it was private? No. Would I be able to afford my almost weekly GP appointments,a necessity to lower my hospital admissions? No. Would I be able to afford my multiple monthly A&E trips for my regular dislocations/spasms/seizures/etc? Nope. Not a chance. Would I have a hope of affording inpatient care – I was admitted twice in November, once in December, and twice more in January. There isn’t a flying monkey of a chance. That’s before we factor in operation costs, ambulances, outpatient appointments etc. It’s a terrifying prospect.
I’ve experienced life without my regular injections and daily meditations, I end up hospitalised on a feeding tube, blind due to eyes spasms, body twisted in spasm and jaw dislocated. It’s hell. It’s an experience I wouldn’t wish on anyone. Yet it’s what I would live with if dismantling our NHS happens.
Yes right now Sajid is only talking about GP and A&E fees. But once we allow the government to open that door will we be able to prevent a tidal wave of change from crashing through? For many just those two charges would be too much at a time where we already have people relying on public warm spots due to the cost of living crisis. I feel his suggestion will simply limit access to our incredible NHS, further isolating the vulnerable and the disabled.
Urology Pick Me Up
Yesterday I attended my first appointment with my urology consultant. I had no idea what to expect. Urology issues are common in my family but I’ve never pushed to have my issues investigated. I had a scan once in 2012 and was told oh it’s just an overactive bladder just try to go to the loo less and you’ll be fine. I was training to be a midwife, I was queen of going to the loo less.
I hadn’t realised just how nervous I was. I’ve been coping with on/off incontinence issues for a longtime now, it can take me twenty minutes to void my bladder and it’s never fully empty. Throw in my prolapse on top and things are just not great in the pelvic region. When he asked me to explain what was wrong the words just tumbled out at top speed, I was vaguely aware of my hands nervously shaking. He stopped me a few times, got me to take a breath, reassured me there was no rush he had time to listen to me and that I could explain in as much detail as I could.
He was eccentric in his mannerisms, but put me completely at ease. After my neuro left this was the pick me up I needed. Before I left his clinic I had appointments in my hand to come back for further testing, instructions for at home testing and a date to review the results. The NHS at its finest.
Day to Day Management
No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday
A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.
I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.
My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections
Acceptable Collaterable Damage for Freedom Day
With Freedom Day ear marked for July 19th and the majority of restrictions being casually tossed away one would have thought we were turning a corner where the public as a whole could breath a sigh of a relief. But with herd immunity being discussed again, talks of case numbers reaching 100,000 daily, it has to be asked are we offering up our disabled, our elderly and our unvaccinated under 18s as collateral?! Its worth remembering that six in ten people who have died of covid in the UK were disabled. The disabled community have been hard hit throughout this pandemic and failed by our government.
As a household two of us were classed as clinically extremely vulnerable and had to shield, perhaps it’s unsurprising that I’m not celebrating freedom day. I am double jabbed and have a degree of protection, but my four year old son who also had to shield, whose school seems to constantly have new cases, he has no protection from a vaccine yet the government suggest classes will no longer have to isolate?! Madness!
The term Freedom Day keeps being tossed around but what freedom is there truly when there is also talks of introducing shielding again for the clinically vulnerable this winter. I’ve spent 14 months shielding already. I understand why people are clammering for to get their normality back, yet surly little and gradual is better than throwing fuel on the fire?
We know so little about Covid-19 and indeed long covid. Can our primary school children/younger generation develop long covid? How will this impact in the long term?
Personally for me I’ll still be wearing a mask in crowded areas/public indoor areas, and keeps a distance from other people. I know people will think I’m over reacting however this is what I believe is best for my family and myself and until covid cases etc are much lower or a vaccine is introduced for children I feel it’s necessary.
An Open Letter to Stagecoach & Arriva Bus
Dear Stagecoach & Arriva Bus,
I’m writing you an open letter as one of your disabled service users, and a frequent customer. I’ve had a few issue traveling before but today took the biscuit. Myself and my two young children were using your service to travel home from a hospital appointment. We flagged a Stagecoach bus down first. The driver pulled over, explained that he had already allowed two prams on, one was in the allocated buggy area and the other in the wheelchair space; neither parent wished to fold their pram down or move and off he went. I was more than slightly shocked as this is against your covid-19 policy which is listed on your site. I’ve screenshot it below, along with a picture taken from another of your buses which points out that it is law for a buggy to be moved from the wheelchair space should one need to board. Yet we were left in the rain.*
Arriva Bus, it was one of yours that we flagged down next. This time, there was only one pram on board. Inexplicably the parent and pram had placed themselves in the wheelchair area despite the buggy section being free. When your driver asked them to move so we could board, they refused to move and the driver simply shook his head at me said “Sorry, love.” And drove off. This caused quite the stir at the bus stop, with others asking if this was something that happened often. It is quite disappointing to say that this is not the first time that has. Here is a screenshot from your own website Arriva of your policy for wheelchairs and prams.
Considering how much time has passed since Doug Paulley first brought his discrimination case to the supreme court back in 2012 over this matter I really expected this issue to be non-existent/on its way out. However experiencing it twice today within a matter of minutes is beyond a joke. How do you explain it to a four year old that two bus drivers didn’t want to follow the law? “Sorry we are not getting that bus either because the driver didn’t want to point out that it’s actually law for her to move over into the pram space. Despite it being his job.” Its disheartening, upsetting, discriminatory and lazy.
I would ask that both companies refresh your drivers memories on your own policies, and on the law. You may have stuck signs inside the buses but that is pointless if you are not going to act on them!
R. McDowall
*I want to acknowledge the kind stagecoach driver who was coming towards the end of a break and witnessed all of this. After waiting a few minutes and realising it was a while before anymore buses going in our direction would be there, cut his break short and drove over to us to let us on. I couldn’t have been more thankful.
Looking forward
Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.
I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.
It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.
Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.
What are you looking forward to?
Disabled Parenting: A Learning Curve
Being a disabled parent is something that three years in I still have not got my head around how to nail. Though does anyone ever nail the toddler years? My children are, at the time of writing, three and 19 months old. Both children are owners of strong, hilarious personalities. Both currently are sound asleep, I know my daughter will wake up in the morning with a rendition of either Baby Shark or Let it go, and my son will wake up just before 6am, delighted that it’s early. I’ll wake up and relocate my knees.
Each day for us is always an unknown to some extent. We try to pace our days by following an activity timetable, which gets switched about at the start of each week. The timetable was introduced not only to help manage with being housebound more due to shielding, but also to encourage subtly paced activities without making it too obvious. The children, know that mummy is disabled and needs to do things differently to daddy, but I do try minimise to some extent how much of that they see.
It is a fine and difficult line to tread. On one hand it is important to me that they understand that everyone is different, some people are disabled and that’s perfectly fine; however my son has a very caring nature, and does worry, so I do try to shield from him some elements that at three he doesn’t need to worry about. For example, right now due to hormones all my joints are loose, this has resulted in multiple subluxes, dislocations, general spasms and fatigue over the day. He’s aware I’m tired today, and slightly sore, but he’s also ‘tickled wrestled’ me, so I know he hasn’t picked up on much.
We made the decision quite a while ago that I would no longer cook with the oven for the family. This was due to a range of issues such as seizure, spasming with a hot pan, or dislocating. My partner does the majority of cooking, and on weeks when he is on late shifts we have carers come in to cook the tea. However I still ‘cook’ I use the phrase very loosely, things using the microwave.Today, was just one of those days that was a dropsy day. Everything I touched seemed to be destined for the floor, which is exactly where the kids porridge ended up after I picked it up to heat it up. My hand spasms were so ridiculous the food had ended up on the floor before I had processed quite what had happened. It reaffirmed to me, that whilst I order the food my place is no longer in the kitchen, and provided the kids with a good few minutes of giggling.
Learning my own hacks to make disabled parenting work for me is something that is a slow learning curve that I am just getting to grips with. For example buying a second seat belt for my wheelchair so I can strap my daughter to me when we go out for a walk. Each day is never the same as we adapt to the needs of my disobedient body and the cheeky duo. The kids never fail to amaze me with how well they cope though. I used to get in a state over the possibility of the fact they had to ‘deal’ with a disabled mum. Whereas now I am so proud of the caring nature the two of them have, along with their inquisitive minds.
Dystonia and Me 