Parenting a Disabled Child: Nurturing Self Worth | Shailen Singh | TEDxTexasStateUniversity

Summary

In this poignant transcript, a father of a disabled child shares his experiences with the challenges of parenting and the systemic barriers they face. He emphasizes the importance of self-confidence and self-worth for his son, critiquing the inflexible administrative processes that often overlook individual needs. The father calls for a reevaluation of societal structures to better accommodate and value the experiences of children with disabilities, advocating for a world that recognizes and respects neurodiversity.

Takeaways

• 👨‍👩‍👧‍👦 The father emphasizes the importance of fostering self-confidence and self-worth in his children, treating his disabled son no differently than his other children.
• 🏢 The administrative processes associated with his son's disability highlight a societal gap between how the father sees his son and how the world perceives him.
• 🤔 The father questions the impact of these processes on his son's self-image and the messages they send about his identity.
• 👶 The father discusses the challenges of finding suitable childcare for his son, as traditional daycares are structured around a linear developmental pathway that his son does not follow.
• 🎢 The father highlights the need for accessible playground equipment and the additional staffing required to support his son's enjoyment of play, which is often not accommodated.
• 🏡 The family has made significant lifestyle changes, including job changes and relocations, to better support their son's needs.
• 👩‍💼 The father notes the higher rates of unemployment and underemployment among parents of children with disabilities, particularly impacting women.
• 🌱 The father is concerned about the early messages children with disabilities receive about their worth, which can lead to self-doubt.
• 📚 He advocates for learning from disabled authors to gain a more personal understanding of disability and to better support his son.
• 🌟 The father wants his son to know that he is perfect, his body is perfect, and his disabilities are a beautiful part of who he is.
• 🌐 He calls for a societal shift in assumptions about disability to reflect its normalcy and to create a more inclusive and equitable world for people with disabilities.

Q & A

What is the main responsibility the speaker feels as a father?

The speaker feels that a main responsibility as a father is to ensure his children have a healthy sense of self-confidence and know their self-worth.

How does the speaker view the parenting of his middle son who is disabled compared to his other children?

The speaker views parenting his middle son, who is disabled, as no different from parenting his other children.

What is the biggest challenge the speaker faces in raising his middle son?

The biggest challenge the speaker faces is managing the multiple administrative processes that arise due to his son's disability.

Why does the speaker feel that daycare centers struggle to accommodate his son?

Daycare centers struggle to accommodate his son because they are built on the assumption that all children follow the same developmental pathway, which does not fit his son's unique needs.

What is an example of a challenge the speaker's son faces at the playground?

An example of a challenge is that the speaker's son requires assistance from a staff member to get out of his chair, onto the swing, and be supported throughout the activity.

How does the speaker feel about the lack of a definitive 'yes' or 'no' from daycare centers?

The speaker wonders what the effect of such non-committal responses is on his son's self-worth, as it implies that he doesn't fit the typical developmental mold.

What impact has the need for care for his son had on the speaker and his partner's careers?

The need for care has led the speaker and his partner to take new jobs, change careers, and move to different locations to access better care structures.

What message does the speaker believe is being sent to children with disabilities from the beginning of their lives?

The speaker believes that the message sent to children with disabilities is that they don't fit societal norms, which can lead to self-doubt.

How does the speaker define ableism in the context of his experiences?

The speaker defines ableism as not a giant, overt threat, but rather something that manifests quietly and insidiously through administrative processes and organizational policies that restrict access for people with disabilities.

What does the speaker want his son to understand about himself?

The speaker wants his son to understand that he is perfect, his body is perfect, and his disabilities are a beautiful and defining characteristic that makes him worthy of love and equitable access.

What is the speaker's hope for the future in terms of inclusion and understanding of disability?

The speaker hopes to partner with his son to rethink inclusion and challenge the assumptions that restrict full participation for people with disabilities, ultimately aiming for a more just and equitable world.

Outlines

00:00

👨‍👩‍👧‍👦 Navigating Childcare Challenges for Disabled Children

The speaker, a father of three, emphasizes the importance of fostering self-confidence in his children. He discusses the unique challenges of finding suitable childcare for his middle son, who has a disability. Unlike his neurotypical children, the father and his partner face a complex process when searching for daycare, as traditional centers are structured around a linear developmental pathway that doesn't accommodate his son's individual needs. The father highlights the systemic barriers that send negative messages about his son's capabilities, such as the lack of accessible playground equipment and the inability of daycares to provide one-on-one assistance. He expresses concern about the impact of these experiences on his son's self-worth and the broader implications for parents of children with disabilities, who often face higher unemployment rates and career stagnation due to the need for flexible care.

05:01

🌟 Embracing Neurodiversity and Challenging Ableism

The father shares his personal journey of learning about disability and the importance of neurodiversity. He stresses the need to challenge societal assumptions and processes that restrict the participation of people with disabilities. The father wants his son to understand that his body and his disabilities are perfect and part of what makes him a beautiful and worthy individual. He advocates for a world that is more inclusive and equitable, where administrative processes value people for who they are, not for who they are not. The father hopes to partner with his son to rethink inclusion and to challenge the limited paradigm of what it means to be human, promoting the understanding that disability is a normal part of the human experience.

Keywords

💡Self-Confidence

Self-confidence refers to a person's belief in their own abilities and worth. In the video, the father emphasizes the importance of fostering a healthy sense of self-confidence in his children, particularly his middle son who is disabled. He wants his son to grow up knowing his self-worth, which is central to the video's theme of promoting a positive self-image and challenging societal norms that may undermine it.

💡Disability

Disability in the context of the video refers to a physical or mental condition that limits a person's movements, senses, or activities. The speaker's middle son has a disability, which affects the family's experiences with childcare and societal structures. The video discusses the challenges faced by the son and the father's perspective on how disability is perceived and handled in various social systems.

💡Administrative Processes

Administrative processes are the formal procedures and systems that organizations use to manage tasks and services. The video highlights the difficulties the family encounters with these processes due to the son's disability, such as finding suitable childcare. These processes often fail to accommodate the unique needs of individuals with disabilities, reflecting a broader issue of systemic ableism.

💡Neurotypical

Neurotypical is a term used to describe individuals who have a typical neurological development, as opposed to those with atypical development, which may be associated with autism, ADHD, or other neurodiversities. The video discusses how daycare structures are built on the assumption that all children follow a neurotypical developmental pathway, which excludes those like the speaker's son who do not fit this mold.

💡Childcare

Childcare refers to the care provided to children by someone other than their parents, often in a daycare setting. In the video, the father contrasts the ease of finding childcare for his other children with the difficulties faced in securing appropriate care for his middle son due to his disability, highlighting the lack of inclusive structures in childcare facilities.

💡Inclusion

Inclusion in the video refers to the practice of incorporating people with disabilities into all aspects of society, ensuring they have equal access and opportunities. The father advocates for a rethinking of inclusion, emphasizing the need to challenge assumptions about disability and to listen to the expertise of disabled individuals in shaping inclusive policies and environments.

💡Ableism

Ableism is discrimination or prejudice against people with disabilities, which can be systemic and subtle. The video describes ableism as something that manifests in administrative processes and organizational policies that limit opportunities for people with disabilities. The father's experiences with childcare and societal structures reflect the pervasive nature of ableism.

💡Neurodivergent

Neurodivergent is a term that refers to individuals whose neurological development diverges from the neurotypical path, often associated with conditions like autism or ADHD. The video touches on the importance of recognizing and valuing neurodiversity, suggesting that society should embrace a broader understanding of what it means to be human.

💡Self-Worth

Self-worth is the value or esteem that a person places on themselves. The father in the video is concerned about his son's self-worth and how societal structures and administrative processes can undermine it. He wants his son to understand that his worth is not diminished by his disability and that he deserves equitable access to opportunities and resources.

💡Equitable Access

Equitable access means providing fair and just access to resources and opportunities for all individuals, regardless of their abilities or disabilities. The video discusses the father's desire for his son to have equitable access to childcare and societal structures, reflecting a broader call for a more inclusive and just society.

💡Systemic Discrimination

Systemic discrimination refers to the ingrained, systemic biases and prejudices that exist within societal structures and institutions. The video illustrates how systemic discrimination against people with disabilities is evident in the lack of accommodating childcare options and the administrative processes that perpetuate exclusion.

Highlights

Being a father is central to the speaker's identity, and he emphasizes the importance of instilling self-confidence in his children.

The speaker's middle son is disabled, and he sees no difference in parenting him compared to his other children.

Administrative processes for his son's care highlight a gap between the speaker's view and societal perceptions of his son.

The speaker questions how these processes affect his son's self-perception and self-worth.

Finding reliable and affordable childcare is a necessity, but the experience is different for the speaker's middle son.

Daycare structures assume a linear developmental pathway, which does not align with the speaker's son's unique path.

The speaker discusses the challenges of finding daycares that can accommodate his son's care routine.

The speaker's son loves the playground, but accessing it requires staff assistance, which is not always available.

The speaker reflects on the systemic discrimination that leads to hypotheticals and possibilities instead of concrete solutions.

The impact of these challenges extends to the speaker and his partner, who have changed jobs and careers to manage their son's care.

Parents of children with disabilities often face higher unemployment and underemployment rates.

The speaker is concerned about the messages sent to children with disabilities about their bodies and self-worth.

The speaker has learned about disability and seeks to understand it better through reading works by disabled authors.

Ableism is not a visible threat but manifests in subtle ways through administrative processes and organizational policies.

The speaker wants his son to know that he is perfect, his body is perfect, and his disabilities are a beautiful part of him.

The speaker advocates for a world that challenges assumptions about disability and values neurodiversity.

The speaker hopes that administrative processes will better recognize and value his son for who he is.

The speaker's goal is for his son to grow up with a healthy sense of self and self-worth, despite the world's limitations.

Transcripts

[Music]

i'm the proud father of three young

children and being a dad is central to

my identity

part of my responsibility as a father is

to make sure that my children have a

healthy sense of self-confidence

i want them to grow up knowing their

self-worth

my middle son is disabled and for me

there's really no difference between

parenting him

and parenting my other children the

biggest challenge i experience

comes through managing the multiple

administrative processes

that we have to experience as a result

of his disability these

administrative processes really

demonstrate the chasm that exists

between how i see my son

and how the world sees him and i can't

help but wonder

what messages these administrative

processes send my son about who he

is and how i as a father need to fight

to overcome them

so case in point child care my partner

and i both work full time

so reliable affordable child care is an

absolute necessity for us

with our other two children it was a

pretty simple process we'd go

online look at reviews take a tour write

a check and we had child care

with our middle son it was a vastly

different experience now

when my middle son was an infant his

developmental curve mirrored that of a

neurotypical child

as he grew older his pathway deviated a

little bit he charted his own path

and this is important because corporate

daycare structures are built on an

assumption

and that assumption is that all children

follow the same developmental pathway

it's a pretty linear pathway

so as a child gets older they develop

new skill sets associated with

independence and self-care

and daycares can adjust their staffing

structures accordingly so a child gets

older older

they need less attention and daycares

can adjust

the challenge here is my son doesn't fit

those assumptions or rather

those assumptions don't fit my son so we

would go in and have very well

intentioned conversations with

daycare center directors and care

providers about what kinds of structures

needed to be in place

in order for my son to be accommodated

we would talk about whether they could

handle his routine of care

my son is a very social being and so we

talk a lot about whether they'd be able

to facilitate happy interactions with

him and his peers

simply put was this going to be a safe

place for him to thrive

and all as a result of those

conversations we would always

walk away with hypotheticals and

possibilities so for another example

let's talk about the playground

my son is a bit of an adventure seeker

and so he loves the playground

it's difficult enough to find accessible

playground equipment but the one thing

my son can do is swing and let me tell

you he

loves to swing the higher and faster he

goes the more his stomach drops

the more happy he is the challenge here

is that in order for him to get out of

the playground and get on the swing

it requires a staff member to be there

with him to pick him up take him out of

his chair put him in the swing and stay

with him the entire time

now i recognize the staffing structures

don't necessarily allow for that i

understand it

but this is one of those examples of

structures that were in place that

weren't built to meet his needs

so as i mentioned we'd always just walk

away with well-intentioned hypotheticals

and possibilities

and as with many instances of systemic

discrimination we never got a hard no

we just simply never got a yes and so i

can't help but wonder

what does rejection like that do to the

self-worth of my son

because he doesn't fit the box of what

neurotypical development looks like

he's routinely and consistently denied

access to resources and services

now don't get me wrong this had an

impact on us as parents as well

my partner and i have taken new jobs and

changed careers in an effort to get

additional flexibility to manage his

schedule of care we also move to

different locations in an effort to

access more structures and models of

care related to family

and we're not unique parents of children

with disabilities have higher rates of

unemployment

higher rates of underemployment and

flatter career trajectories

and this is something that impacts women

caregivers much more so than it does men

but we're not the issue here in fact

we're an ancillary part of the

conversation

the key concern i have is this what

messages do we send

children with disabilities about their

bodies from the very beginning

from the very start in child care

we plant seeds that they don't fit and

we leave

them to deal with the fruits of

self-doubt that arise as a result of

these seeds

when all in all those seeds were poison

we measure these children

based on a scale that was never built

for them and then instead of

recalibrating the scale we simply move

on to the next child without

giving any sort of consideration about

what the measurement did

to the first child in the first place

now as a result of being my son's dad

i've learned a little bit about

disability and i have a lot left to

learn

i have found it important to supplement

what i've learned by reading works by

disabled authors

in in efforts to get a more personal

lens on what disability looks like so

that i can understand who i need to be

in order to serve him well but the one

thing that i've absolutely learned

is that ableism isn't some giant

boogeyman chasing you around with a

chainsaw

rather it manifests itself quietly and

insidiously and things like

administrative processes and

organizational policies telling you what

you can't do

because of who you are so many more

hoops to jump through

so many more forms to fill out so many

more knows to get through in hopes of

getting to a yes

now right now it's my job to take care

of that stuff after all my son is only

eight years old

but i also need to set him up to be able

to navigate through a world that wasn't

built for him

and told him as much from day one and so

in order to do that there's a few things

that i need to make sure that he knows

i need for my son to know that he is

perfect

i need for my son to know that his body

is perfect

i need for my son to know that his

disabilities

are a defining characteristic of who he

is

and they define him as something

beautiful worthy of love and worthy of

equitable

access i need for my son to know

the simple truth is that he deserves

better

better than anything i'll ever be able

to give him but most certainly better

than anything the world

currently gives him and in doing so i'm

hopeful that i can partner with my son

to maybe think

rethink how we think about inclusion and

conclusivity

because it's an easy concept to talk

about and it's an easy thing to talk

about valuing neurodiversity

but until we get to the point where we

challenge the assumptions that undergird

processes associated with

a disability that restrict full

participation for people with

disabilities

until we listen to disabled people as

the experts

and utilize their expertise in framing

what these processes need to look like

and in doing so recognize that the

assumptions that we had were based on a

very limited paradigm of what it means

to be human

and until we then shift those

assumptions to reflect the fact

that disability is a normal part of the

human experience and in fact it's one of

the most ubiquitous parts of human life

we will continue to plant seeds that are

antithetical to making this world a more

just

and equitable place for people like my

son

now as i mentioned at the start my job

as a father

is to make sure that my son grows up

with a healthy sense of self a healthy

level of self-confidence and

knowing his self-worth it's something

that i strive for on a daily basis

i am hopeful that someday these

administrative processes that we can't

avoid interacting with

do a better job of recognizing him and

valuing him for who he

is instead of distilling him down to who

he's not

thank you

you