Written by Danishy Kuganesan
Introduction
Being a parent is both a blessing and a gift that the earth has to offer. If you’ve been a parent, parental figure, caregiver, or guardian of someone, you know that you would want to be there for your family. But what if you have something so life-changing, like a physical or mental disability? For parents with disabilities, it is the unique story of perseverance and strength in oneself and in others. We’re going to explore the following topics:
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What having a disability means for a parent
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How a book shines a light and speaks up about the struggles that parents with disabilities face daily
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The frustrations with being a parent with disabilities
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How children of parents with disabilities are affected
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Rules and regulations that'll support parents with disabilities
What it Means to be a Parent with Disability
Being a parent with a disability means navigating the rigid and unforgiving world in a way that doesn’t meet their specific needs. We still live in a world where the infrastructure and technology present make lives challenging for parents with disabilities. Some of these instances include not having a sign language interpreter at public events, walkways that are too narrow for people who ride in a wheelchair or wear crutches and places that don’t have ramps or elevators.
There are also times where children of parents with disabilities are removed from their family. This can happen as early as the day the children are born. According to statistics taken from the US National Council on Disability, there is an 80% chance that parents with psychiatric or intellectual disabilities will have their children removed from them at birth. As well, 13% of physically disabled parents reported discrimination in having custody of a child in custody cases.
It also doesn’t just mean navigating the world, but doing that while taking care of a child or multiple children. Parents with disabilities often feel like the world doesn't meet their needs, which is important to their safety, and they feel guilty for not being able to be there for their children for special events. But there is also beauty that parents with disabilities face, as it lets them see the world in a more empathetic and powerful way.
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How a Book Spotlights Parents with Disabilities
There is an anthology book that shares 9 stories of parents with disabilities and how they navigate their lives as both people and parents. This book is called Accessing Parenthood: Stories by and About Parents with Disabilities, edited by Susie Angel and Laura Perna of the Coalition of Texans with Disabilities. The book then proceeds to tell the stories of 9 parents and their journeys of navigating the challenges of parenthood and disability. The book covers multiple disability types, such as visible disabilities (like multiple sclerosis) and hidden disabilities (such as depression).
The stories shared in this book are presented in candid ways. They also choose to voice out the frustrations they face. It results in leaving readers feeling connected to the authors as people, not just their disability. The book highlights what it's like to be a parent with a disability and how that affects their abilities to be a provider of support for their families, and how, by writing out these experiences, they can articulate their experiences and feelings in tangible pieces.
Frustrations Parents with Disabilities Face
Parents with disabilities face a lot of physical and emotional turmoil that they must overcome daily. These instances include the following:
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Physical limits & barriers (such as limited access to services and technology that make their lives manageable): Parents with disabilities may have trouble with mobility when taking care of their children. This includes lifting, carrying, or bathing their children. They are also faced with environments that don’t accommodate their needs, which makes it difficult to participate in community events or gain access to necessary essential services.
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Financial Constraints & Employment Difficulties: Parents with disabilities can face difficulties when making ends meet and providing financially for their family because of limited employment opportunities, more chances of likely getting jobs that have lower wages and the overall expenses of care and treatment for parents with disabilities.
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Social Stigma and Discrimination: Parents with disabilities can face prejudice, judgment, and discrimination by other people (which includes other close family members) because of having a disability. It can result in insecurity and isolation
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Mental Health and Wellbeing: Having a disability takes a toll on their mental health. Besides keeping up with family tasks and taking care of themselves physically, parents with disabilities may struggle with maintaining their mental wellbeing. This can result in increased stress, anxiety, and depression. Keeping a balance between coping with their disability, staying physically healthy and maintaining a positive mental well being is critical to their success and happiness.
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How are Family Members Affected by parents with disabilities?
For parents with disabilities, they are aware that having a disability doesn’t just affect themselves; it can also affect other family members too, such as their partners, children, and grandparents. Some parts of a person's life change when a parent receives a diagnosis with a disability. This can be in the form of roles reversing to accommodate the parent’s needs and emotional turmoil surrounding care towards their parents and themselves for caregivers, children, and family members.
But not all experiences are negative when family members take care of parents with disabilities. Family members and children learn more about patience when choosing to take care of a parental figure with disabilities. Family members also gain a holistic perspective on how rigid the world is, so they have more passion and understanding of how crucial an accessible world for all people is. Lastly, caring for a parent with disabilities can inspire someone to work in special needs education fields. These fields include nursing, doctoring, special needs education assistance and disability support work.
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Existing & Upcoming Regulations For Parents with Disabilities
Despite the world's rigidity, many current and upcoming regulations benefit and support parents with disabilities. An article by a social work policy writer named Elizabeth Lightfoot criticizes the existing rules for parents with disabilities and offers some hope for revisions. Here are two upcoming revisions to rules and regulations that will help provide support to families with parents with disabilities living in the US.
One of them being the revision to the rules of Section 504 of the Rehabilitation Act. The revision clarifies that disability discrimination is not allowed in any part of the child welfare process. As well, child welfare agencies throughout the United States now must ensure that they are not making decisions based on speculation, stereotypes, or generalizations of parents with disabilities. This revision also includes that Agencies must ensure that parents with disabilities can participate in any services they provide, which are (not limited to) parent-child visitation, parenting skills programs, family reunification services, and child placements in foster care settings or the care of another relative.
On the Canadian end, there is access to programs for parents with disabilities. One such program is the Ontario Disability Support Program (ODSP), which is available to Ontario residents. ODSP provides resources and financial assistance to families who have parents with disabilities to help them pay for medical costs.
Take Away
To recap, we took a look at what it means to be a parent with a disability, which comes with its own set of challenges. Next we looked at how the book “Accessing Parenthood: Stories by and About Parents With Disabilities” chooses to speak up about the struggles parents with disabilities face. Later on, we looked at the frustrations parents with disabilities may come across, which include physical limits/barriers, financial constraints, social stigma, and mental health. After that, we looked at how other family members are impacted by a parent with a disability. Lastly, we go through some existing and upcoming rules, regulations, and financial programs that Canada and the US have to offer to help parents with disabilities.
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