Category: Archive

Posted in Archive, July 2024

12 years of Dystonia

Posted on by dystoniaandme



Twelve years ago, Dystonia turned my life upside down, marking the beginning of a long and complex journey. Losing one’s health is a challenge that many of us face, but it’s one that few are prepared for. Initially, my mindset was consumed by the desire to “conquer” Dystonia and return to my career as a midwife. This remained my focus for many years. However, more recently, I’ve shifted my perspective to prioritize living a fulfilling life alongside my Dystonia. This shift has not been without its challenges, as I’ve had to come to terms with the fact that some of my previous goals are no longer attainable. Yet, I’ve found this mindset to have helped my mental health

One of the most significant lessons I’ve learned over the past twelve years is the importance of self-advocacy. I’ve grown in confidence in my ability to effectively communicate with medical professionals and educate myself about my condition. This confidence has been crucial in managing my health  I’ve developed a passion for advocating for individuals living with Dystonia and promoting greater awareness about this condition. I believe it’s essential to shed light on the realities of living with a disability and the necessary changes that must be made to create a more inclusive society.

I highly recommend Dystonia UK to anyone seeking advice or information about Dystonia. This charity was a lifeline when I was first diagnosed, and I still frequently utilize their resources today.

Posted in Archive, may 2024

Dystonia Superstar England – Shortlisted

Posted on by dystoniaandme

I am absolutely delighted to share that I have been shortlisted  for the Dystonia Superstar England category in the Dystonia Awards.

As many of you are aware, I was diagnosed with Dystonia in my late teens, and over the past decade, I have been dedicated to raising awareness, advocating for those affected, and fighting for improved care and support.

I am now excited to invite you to show your support by voting for me through the link below, you are able to vote as many times as you like. I would like to extend my heartfelt thanks to those who nominated me for this award – I am truly grateful and moved.


https://www.dystonia.org.uk/awards-vote

Posted in Archive, may 2024

Overcoming Fear – Baby Steps

Posted on by dystoniaandme

After being run over last November I have generally avoided going out – for months I only left the house to attend church once a week. Sometimes the panic and anxiety would be too much and it would be a few weeks in the house before my husband would be able to coax me back out.

It’s now six months later and I’m beginning to feel like I am seeing glimpses of my old self again. I’ve been having regular sessions with a trauma therapist who specialises in EMDR. It’s been very helpful.

The panic attacks haven’t stopped but they’re not as severe or as often. I can see progress. The other week on my way to collect the children from school I heard a child screaming ‘Mummy’. That sound took me back to the collision. The memory of my son standing over me screaming mummy, the terror of not understanding what happened, and the overwhelming pain, consumed me. I found myself turning my wheelchair off, crying hysterically in the middle of the pavement. The difference this time? The panic only lasted ten minutes. I didn’t have to phone for somebody to walk with me, I was able to eventually calm down, and carry on to collect my kids. 

Today I need to go to the bank and update my personal details as I got married at the end of October, just 5 days before the accident. It’s a task that I should have done months ago but I was living in a vice-like grip of fear. To get to town involves crossing multiple busy roads. But I cannot avoid roads forever – even if I’d like to. As I’m writing this, I’m sitting in Costa not far from the bank. Allowing myself time for my anxiety to reduce. Pacing my journeys this way and allowing myself rest periods away from the road helps make the task more manageable.

Everyday is different and has its own challenges but I’m finally learning to squash the fear back down. It’s not a race to conquer it, just one baby step at a time.

Posted in April 2024, Archive

An Open Letter to the Prime Minister

Posted on by dystoniaandme

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

Posted in April 2024, Archive

UK gov sick note proposal; ableist and stigmatising

Posted on by dystoniaandme

In a recent move by the UK government, changes to the sick note process have been announced that have raised concerns among disabled individuals and their advocates. The changes are said to make the process more efficient and streamlined, alongside helping to further cut the welfare budget. A move that is not surprising by a government who have repeatedly penalised disabled persons over the last decade.

The new process specifically targets those with ongoing mental health concerns adding needless stress and stigma. Furthermore, the lack of accessible working roles for disabled individuals makes it even more difficult for them to return to work. Many disabled individuals face barriers in finding suitable employment due to discrimination and ableism in the workplace. This has become a more noticeable issue in recent months due to the focus on stopping remote work for many businesses. Without the proper support and accommodations, many disabled individuals are unable to work, this will result many being unfairly penalized under the new sick note process.

This move by the UK government is sending a dangerous message that disabled individuals are not valued or deserving of support. After the UN hearing recently on the violation of disabled persons human rights, it is disheartening to see further backlash against the disabled community. This runs the risk of  leading to further stigmatization and discrimination against disabled individuals, who already face many challenges in society.

The government must place more value on the account of  the needs and experiences of disabled individuals when making policy decisions. Rather than demonizing and penalizing disabled individuals.

The changes to the sick note process in the UK are worrying and ableist, and they highlight the need for more support and understanding for disabled individuals in society. Disabled individuals deserve to be treated with dignity and respect, and it is essential that policies are put in place to ensure their rights and needs are met.

Posted in April 2024, Archive

Internalised Ableism

Posted on by dystoniaandme

What does internalised ableism look like?


Internalized ableism can manifest in a variety of ways, including self-deprecation, comparing oneself to non-disabled individuals, and downplaying the need for accommodations or support.



One common way that internalized ableism may present itself is Individuals with disabilities feeling inadequate or inferior because they are not able to perform tasks or activities in the way society dictates. This can lead to feelings of shame, guilt, and self-doubt.


For others internalized ableism can manifest through a reluctance to seek help or accommodations. They may resist asking for assistance or accommodations because they believe that they should be able to cope with their disability on their own. This can result in unnecessary hardship and additional stress. This is something I struggle with daily.



Undoing internalized ableism is a process that takes significant time and effort. For those who embark on this journey it may involve seeking therapy or counseling, connecting with a supportive community, and practicing self-compassion.



By recognizing and addressing internalized ableism, individuals with disabilities can begin to cultivate a healthier mindset. They can learn to appreciate their unique strengths and abilities, and advocate for their needs and rights.



Undoing my own internalised ableism is a personal path I am currently on. It is not an easy process and there have been slips on the way already. But I don’t doubt I will be thankful for doing so.

Posted in April 2024, Archive

Accessibility in the home

Posted on by dystoniaandme

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.

A black front door with a grey ramp leading up to it. The house number is scribbled out with black lines for privacy

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.

Posted in April 2024, Archive

Let’s talk about Ableism

Posted on by dystoniaandme

The recent podcast episode that featured ableist remarks and disgusting views towards disabled persons has sparked a conversation that needs to be had.

When we discriminate and label disabled individuals with disgusting terms such as ‘mangled’ & ‘grim’, we are contributing to the systemic ableism that is already prevalent in society. The last thing we need is for discrimination to be given a platform and normalized even further.

It is important to remember that health is in no way guaranteed, and you could become disabled at some point. Whether it be from an accident, illness, or old age, our health can deteriorate. Would you then view yourself as “mangled and grim”?

For those who have been affected by the hurtful remarks made in the podcast, remember your self-worth. You are deserving of love and respect, and ableism has no place in our society.

Posted in Archive, march 2024

The Importance Of Addressing Ableism

Posted on by dystoniaandme

A screenshot from BBC News showing article title ‘parents offered class photo with no Complex needs pupil’. A woman is featured, with brown shoulder length hair, light make up, forest green top.

In a recent BBC news article, it was reported that parents were offered a class photo without any of the disabled pupils included. This act of ableism is incredibly disheartening and highlights the ongoing discrimination and exclusion that many disabled individuals face on a daily basis.

When my Dystonia first manifested in 2010, I refused to attend school for three months. My face was distorted by spasms which left me highly self conscious. If I had been subjected to such discriminatory treatment, I can only imagine the lasting impact it would have had on my self-esteem and willingness to participate in school.



Ableism, is a pervasive issue that has far-reaching consequences. This prejudiced mindset leads to exclusion, negative stereotypes, and unequal treatment, reinforcing the idea that disabled individuals are inferior.

What is particularly troubling about this situation is that there were multiple opportunities for intervention and correction. The school staff should have immediately recognized the discriminatory nature of excluding disabled pupils from the class photo and taken steps to rectify the situation. Furthermore, offering the photos to parents should never have happened.

It is disheartening to see that acts of ableism are still prevalent in our society and in our schools. It is crucial that we continue to raise awareness about the importance of inclusivity and equality for all and challenge discriminatory behaviour.

Posted in Archive, march 2024

The UK Government’s Violation of Disability Rights: What You Need to Know

Posted on by dystoniaandme

Disability inclusion as a human right should be universally upheld. Too often it is not. In 2017, the UN found the UK government guilty of ‘systematic and grave’ violations against the disabled community under the UN Convention on the Rights of Persons with Disabilities. The UK then government failed to attend a crucial hearing in August 2023, proividing no reason for their abscene. Disabled individuals and organizations who attended this hearing provided evidence to the UN committee of further negtive long term impacts to disbled citzens due to governmental policies and funding cuts/services.

March 18th, 2024 the UK government is expected to appear before the UN committee and demonstate the actions it has taken since 2017 to rectify these human rights violations. At the heart of these violations are the breach of three key articles: Article 19 (independent living), Article 27 (Work & Employment), and Article 28 (Adequate Standard of Living & Social Protection). t is imperative for there to be global prescence to witness this committee, so as to increase awareness on the current lack of action taken to address the violation of disabled peoples human rights in the UK and to advocate for this ongoing crisis. You will be able to watch this session virtually using the below link.

Where can I watch? https://webtv.un.org/en/asset/k1s/k1svtljvtr

What time? 2pm-3:30pm UK time