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Interview with cerebral palsy blogger Heather Monger
According to disability charity Scope, cerebral palsy affects about one in every 400 children in
the UK.
It is a condition that affects muscle control and range of movement in many different
ways that can be painful and uncomfortable. Those living with cerebral palsy can ease
symptoms through physiotherapy that focuses on strength and flexibility exercises.
Some specialists also advise heat treatment, massages and speech therapy, depending on the severity of the condition. All these types of therapies are encouraged in the hope to enable more independence and balance in the lives of the person experiencing the condition first-hand, as well as their family.
Like any disability, each person living with cerebral palsy experiences it in their own way. And we’d like to share Heather Monger’s experience who has a uniquely positive and inspiring outlook on life. Heather blogs about her everyday life living with cerebral palsy on her Instagram page, and spreads awareness about charities and awareness days that further the reach and understanding of this condition.
Her happy, smiley face is featured frequently alongside witty memes like ‘Walking is so yesterday,’ which make her followers not only giggle but see that having a disability doesn’t have to be all gloom and doom. While many people living with cerebral palsy will experience low days, Heather highlights how many days can also be happy, stimulating and fulfilling.
“Cerebral palsy is in everything I do,” says Heather. “It’s like a dark shadow following me around in every thought I have or move I make as I have to make sure everything is accessible to my electric wheelchair.” Heather started blogging during lockdown in 2020 as she thought it would be a positive thing to do and other people living with cerebral palsy may be having similar feelings. “I thought getting my thoughts and feelings out on “paper” would also help others during a very difficult time in our lives.”
During this period and also more recently, Heather has taken part in social disability activism, speaking with BBC Radio 4 about the need for increased accessible housing. “I have discovered that I am braver and stronger than I thought. I have a fire in my belly for the rights of disabled people,” she says. “We deserve to get the right care packages and work opportunities and have the same enjoyment as everyone else on a day out.”
“I take inspiration from everyone around me,” Heather explains on a final note. “Everybody has a story to tell. I don’t see myself as inspirational, I just get on with life living independently with support.” And that shows her beautiful spirit precisely.
Follow Heather on Instagram for inspiration on how to live well with a disability.
Featured
Disability Rights Campaigners Call for Assisted Dying Legislation
Disability rights campaigners are urging MPs and peers to support assisted dying legislation. They emphasize that everyone deserves the chance for a good death. This call is led by Tom Shakespeare, a prominent professor of disability research at the London School of Hygiene & Tropical Medicine.
Supporting Terminally Ill Individuals
The group expresses solidarity with terminally ill individuals who seek the option of assisted death. They acknowledge the concerns raised by opponents regarding the value society places on disabled lives. A documentary titled Better Off Dead? by actor Liz Carr highlights these risks. However, Shakespeare and his co-signers argue that disabled people represent a diverse community. Their experiences and opinions vary significantly.
In a letter to parliamentarians, the campaigners state, “We know some prominent disabled individuals oppose assisted dying. However, polling shows this view is not representative of the majority.” They point to an Opinium poll conducted for Dignity in Dying, indicating that nearly 80% of disabled individuals support assisted dying legislation.
The Right to Autonomy and Control
The letter emphasizes that all individuals deserve a good life and the autonomy to make decisions about their futures. It highlights the importance of independent living. As people approach the end of their lives, they should also have the option for a dignified death, with various choices available.
The campaigners express concern that too many individuals suffer in pain. They argue that assisted dying legislation is a compassionate response to this suffering. The proposed law in the UK focuses on terminally ill, mentally competent adults. This legislation has not expanded in similar laws in Oregon, Washington, and other US states.
Upcoming Legislative Debate
A private member’s bill, introduced by Labour MP Kim Leadbeater, aims to legalize assisted dying for those who meet specific criteria. The bill is scheduled for discussion next month in Parliament. If it receives initial support, it will undergo further scrutiny by committee members.
Although the sentiment for assisted dying legislation may have shifted since the overwhelming rejection in 2015, the outcome remains uncertain. The letter has also been signed by several prominent individuals in the disability rights community, further demonstrating support for this crucial issue.
Election 2024
Voters with Disabilities: Feeling Overlooked in the 2024 Presidential Race
A new Rutgers University report estimates 40.2 million eligible voters in the upcoming U.S. presidential election are disabled. When factoring in people who live with someone who has a disability, nearly one-third of the voting population is involved. Despite this, many voters with disabilities feel overlooked, especially on health care—a central campaign issue.
A Growing Voting Bloc
As the U.S. population ages, the number of voters with disabilities is increasing. However, many challenges still exist. These include inaccessible campaign materials and the fact that candidates like Donald Trump and Kamala Harris rarely address disability-related issues, such as the ongoing impact of COVID-19. Trump recently made comments at a rally that were viewed as discriminatory by advocacy groups.
Advocates Demand Recognition
Dom Kelly, founder of New Disabled South, says this voting bloc is essential. “We are their path to victory,” he insists, warning that ignoring this community could affect election outcomes. Matt Mills, a 41-year-old voter from Ohio who has lupus and other health issues, supports Harris for her health policies but still feels disabled voters are often overlooked.
Mixed Experiences with Candidates
Jim Piet and Patricia Vincent-Piet, a married couple from New Hampshire who both have cerebral palsy, have had varied interactions with political candidates. Some have been receptive, while others have not. Their main concern is policy, especially Medicaid, which provides essential support to people like Jim. They plan to vote for Harris due to fears that Republicans may cut Medicaid services.
Damaging Political Rhetoric
Trump has a history of offending the disabled community, such as when he mocked a disabled journalist in 2015. Recently, he falsely claimed at a rally that Harris was “mentally impaired,” leading to criticism from advocacy groups. Meighan Stone, who uses a wheelchair due to long COVID, emphasizes that the issue goes beyond offensive comments. “We live with this discrimination daily,” she says.
Addressing the Issues
The Harris campaign has taken steps, such as hiring Anastasia Somoza, a disability advocate, as its disability engagement director. Somoza, who has cerebral palsy, has been working to ensure campaign events are accessible, offering virtual options. However, a recent virtual event fell short, causing frustration for voters like Marissa Ditkowsky, who has muscular dystrophy. Technical issues such as missing closed captioning and a sign language interpreter made the event less accessible.
Ensuring Voting Accessibility
The U.S. Election Assistance Commission is working to ensure voters with disabilities can vote independently and privately. Commissioner Benjamin Hovland stresses the need for better training for poll workers. Training will include ways to assist those with anxiety or who process information differently.
Patti Chang, a blind voter from Chicago, explains that exclusion goes beyond the political sphere. “Society needs to expect more inclusion,” she says. “This issue doesn’t just affect voting; it’s everywhere.”
Conclusion
With millions of voters with disabilities preparing to vote, both campaigns need to address their concerns. Making campaign platforms accessible and engaging with these voters could have a significant impact on the election.
Featured
Resilient Spirit: Sokhina and Rozina’s Transformative Journey to Independence
Sokhina and Rozina’s Journey
In Kurigram, Bangladesh, Sokhina and Rozina’s journey exemplifies resilience and determination. Sokhina, a 33-year-old single mother, fights every day to improve her daughter Rozina’s life. At just seven years old, Rozina lives with cerebral palsy, but together they face numerous challenges. Sokhina’s unwavering strength shines as she navigates motherhood in a region often struck by climate hazards.
Overcoming Adversity: Challenges Faced by Sokhina and Rozina
Sokhina and Rozina’s journey has been fraught with hardship. After enduring a violent marriage, Sokhina faced a painful divorce, which her husband sought solely because of Rozina’s disability. Left to care for her daughters alone, she dedicated herself entirely to Rozina’s needs for the first five years of her life. During that time, they suffered social exclusion and harsh judgments from neighbors who labeled her “crazy.”
“I felt helpless and worried about Rozina’s future,” Sokhina recalls, reflecting on her struggles during those early years.
Support and Rehabilitation: Transforming Their Lives
In November 2022, Sokhina’s life began to change when a volunteer from Humanity & Inclusion (HI) introduced her to the MISEREOR project’s rehabilitation teams. At that time, Rozina could neither sit, stand, nor speak, and her health deteriorated due to inactivity. HI provided essential support, including special seating and a walking frame, significantly improving Rozina’s mobility and overall well-being.
“The progress Rozina has made fills me with pride,” Sokhina shares, expressing her joy in her daughter’s achievements.
Building a Sustainable Future: Economic Empowerment for Sokhina
With additional assistance from HI, Sokhina received livelihood support in the form of a sewing machine and dressmaking training. This opportunity empowered her to achieve financial independence while focusing on Rozina’s rehabilitation.
“Since becoming an HI beneficiary, I’ve learned many skills, including how to support Rozina’s functional rehabilitation,” Sokhina explains. “Now, people around me respect me. All I want is for my daughter to get better and for me to educate her.”
Community Support: The Importance of Collective Action
HI Bangladesh actively participates in various projects aimed at supporting people with disabilities and their caregivers in the Kurigram region. Their work encompasses rehabilitation, mental health support, and economic empowerment initiatives, helping vulnerable groups enhance their livelihoods and adapt to the impacts of climate change.
Conclusion: The Ongoing Journey of Sokhina and Rozina
Sokhina and Rozina’s journey highlights the power of resilience and community support. With ongoing assistance, they continue to strive for independence, proving that even in the face of adversity, hope and strength can prevail. Their story inspires others facing similar challenges and emphasizes the importance of collective action in transforming lives.
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