How to Heal The Wounds of Ableism (And Build A More Unified Disability Community)

A few weeks ago, I wrote a guest blog post about how you can empower employees with invisible disabilities. I mind-mapped how I would dive deeper into the topic and write more specific posts. I was excited about it.

But somehow, my restless brain nagged.

I wanted to write something stimulating. Something heartwarming, and inspiring.

So today, I’d like to silence the whirlwind, I’d like to show you how we can heal the wounds of ableism, unite the disability community, and shape a more disability-inclusive society.

Are you ready?

Confess your internalised ableism belief

Internalised ableism belief is such a common way of thinking.

On the one hand, disabled people are viewed as broken victims to be loved, taken care of, and protected from harm.

On the other, they're seen as people who receive too much kindness and social protection.

I have a friend, who for the last 6 years, has been trying to educate her workplace about blindness and guide dogs.

She says:

"It's been an excruciating long journey. People just don't seem to understand that being blind doesn't mean I'm helpless. I try to explain how my guide dog helps me but still many fellow employees look at me feeling sorry. "

One of my clients says:

"It stresses me out to talk about my chronic illness in public because people jump to the conclusion that I'm cheating the system."

As you can imagine, both beliefs are traumatizing, and if you've been surrounded by ableist ways of thinking, it's only natural that you've internalized them to some extent.  

But that's not all.

In my experience, disabled people within the disability community have a yucky habit of letting their internalised ableism run wild.

I know I have.

For example, I remember family telling me:

"You'd forget your head if it wasn't attached to your shoulders."

Teachers would say:

"Stop twirling your hair. Why can't you just sit still like the other students..."

So, I grew up thinking I'm not good enough, I don't fit in, and I learned it's best to control this behaviour so that people don't think I'm weird...or different.

This belief is damaging. This kind of assumption is limiting, and it leaves us feeling bad about ourselves.

If you’ve been wondering how to end ableism, the first step is recognising it in you, coming to peace with it, and letting go.

And this is exactly what these two captivating disability-inclusive souls are doing.

Celia Chartres-Aris (Née Hensman) and Jamie Shields are the co-founders of Unlearning Ableism, and they've launched a LinkedIn live series that explores ableism in a safe, open space.

In each episode, they're joined by wholesome guests sharing their own journey with ableism. The perfect space for everyone to learn, ask questions, and connect.

Embrace disabilities different from your own

I think you'll agree with me when I say, not only do we discriminate against ourselves and see our disability as something to be ashamed of–we don’t always trust people who seem less disabled than us.

What do I mean?

Let me explain with an example.

My son was desperate to use the toilet in our favourite cafe but they were all occupied. After telling me he couldn't wait any longer, I told him to use the accessible toilet.

When he walked out he was met by a very shocked and annoyed man who insisted he looked too healthy to be using the toilet for disabled people.

Of course, at the not-so-grown-up age of 11, my son stood staring at the man feeling sorry.

What's happening here?

First of all, my son was judged based on his appearance. The man saw a 'healthy-looking' boy with no assistive device and assumed my son wasn't disabled.

This behaviour leaves us struggling, and our chances of achieving genuine disability inclusion and collaboration are as thin as a vegetarian (like Moi) at a barbecue in Texas.

But if the man took the time to ask, he'd realise my son does have a disability. More important than that he'd have the opportunity to strike up a meaningful conversation that would help him grow, and make a disabled boy feel good about himself.

So, how can we bridge the gap?

To truly unify our disability community we need to be mindful of the discrimination toward ourselves, and start identifying our own ugly prejudice towards people with disabilities that are different from our own.

In the example above, I gently explained my son is disabled. He has epilepsy. He's also an Autistic ADHDer (as he likes to call himself), and has dyslexia.

And, although he isn't a wheelchair user, he has every right to use the disabled toilet.

Sure, if he didn't reeeealy need to use the toilet, our first choice would have been the non-disabled toilet because as he says:

"Mom, that sign shows a person in a wheelchair. I don't have a wheelchair."

I'll let you think about that.

Give equal priority to accessibility

Another factor to consider is the degree of ableism.

Because ableism also depends on the workplace setting and the type of disability.

According to the 2023 study from the Economic and Social Research Institute, employers are more likely to hire a candidate with a spinal disorder than a candidate with an anxiety disorder.

So, how can we change this?

How can we erase our ignorance toward disability?

One way is by creating accessible designs, products, and services with equal priority.

For example:

• Design your building to be accessible for a wheelchair user. 
• Include braille descriptions and tactile lines for a blind person. 
• Create calm spaces for neurodiverse people. 
• Offer a deaf interpreter for deaf people. 

Now, this list isn’t complete but the idea is to extend the value of human welcome to include the needs of every disability group.

Why is this important?

For starters, when we open ourselves up and empathise we allow ourselves to grow. We become better humans. And, we make the world a more inclusive home for all.

One of my favourite ways to do this is WelcoMe.

WelcoMe is a unique online solution founded by Gavin Neate. Gavin is on a mission to make the world see everyone as equal and he believes it all starts with our first interaction with another person.

So, in 2017 he launched the proximity-based staff awareness of disability with WelcoMe.

Like a kind friend, WelcoMe lets disabled visitors communicate with service teams before they arrive at their location. This means disabled visitors know they'll meet someone who understands their needs.

But it gets better.

While disabled people get the help they need at that moment, they're also encouraged to leave home, and become a more active part of society. This makes them feel more independent, more appreciated, and gives them a sense of belonging.

That's when the most amazing thing in the world happens.

As businesses support disabled people, and become more trustworthy and happy destinations, disabled people begin to see themselves in a new light.

A light that says, society might not be perfect, but I am.

Bridge the socio-economic disability gap

Did you know that if you’re a white, male, heterosexual disabled person you’re more likely to be accepted and included in non-disabled society?

On the other hand, if you’re a black, woman, and LGBTQ+ disabled person, well, not so much.

Furthermore, a recent study from the Economic and Social Research Institute reports that mental health conditions, intellectual disabilities, and autism are judged more negatively than physical or sensory disabilities.

It also showed that physically disabled women are judged more negatively than physically disabled men regarding having relationships.

These hostile gaps are like the flu; one person brings the bug and ten other people catch it.

But that’s only half the story.

If you’re a disabled person with a stable income — a grand education, and a fool-proof employment experience — you’re more independent, more cherished, and less vulnerable to ableism.

But, I hate to break to ya...

Most disabled people aren't independent, cherished, or strangers to discrimination.

In fact, according to Gitnux Market Data Report 2023:

• In the European Union, 47.4% of disabled people aged between 20 and 64 are employed, compared to 72.5% of those without disabilities.
• The unemployment rate for disabled people in the UK has remained almost twice as high as the rate for non-disabled people over the past five years.
• In the US in 2021, 21% of people with a disability participated in the labor force, compared to 67% of people without a disability.

So how can you bridge the hostile socioeconomic gap?

Try to practice disability inclusion within the disability community.

If you’re disabled and safely integrated in society think about how other disabled people live, and how you can support their disability-inclusive journey.

What do I mean?

For starters, we can unite our collective voices and support each other.

And, that’s exactly what this unique organisation does.

Billion Strong is a global network created to bring the billions of voices of people with disabilities together to build a positive disability identity, fight for our rights, and support our efforts in creating a more disability-inclusive world.

If you're a business, you can make reliable efforts and genuinely include marginalized and economically underprivileged disabled people and go beyond just recruiting. Do what it takes to empower their full participation.

Unlearn ableism and renew your faith in the disability community

What if, for today, you choose to believe you can let go internalised ableism?

What if, for today, you choose to believe you can embrace disabilities that are different to your own?

What if, for today, you choose to believe you can give equal priority to accessibility?

And, as the day ends, you choose to believe these values and beliefs are more than enough for one day.

And, what if, tomorrow, you choose to believe all over again?

It’s up to you.

8 Incredibly Smart Types Of Certified Assistance Dogs (Plus Two Rookies)

Imagine walking into your local bakery on a snowflake Sunday morning.

You hear the tinkling sound of the shop bell, the door swooshing open, and the fragrant crusty smell of freshly baked bread covering you like a warm blanket.

Heaven.

That’s when you notice the muddy dog with a harness sitting by the counter.

Dogs aren’t allowed in a bakery, are they?

It's true.

In most cases, dogs aren’t welcome in a bakery.

But, a service dog, or a service dog in training, has every legal right to accompany his person in any business they choose to visit.

You see, assistance dogs help disabled people juggle daily tasks in a triumphant way that tells the world; I got this.

For example, a hearing dog will alert a deaf person.

A mobility/disability assistance dog will pull a wheelchair; retrieve objects, open and close doors, even turn lights on and off.

A guide dog will guide a blind person into your local bakery so she can also buy that mouth-watering bread you want to gobble up.

So you see, assistance dogs are working animals, not your average pet. They're trained to provide support directly related to a person’s disability.

Want to dig into more detailed information on service animals?

Check out Assistance Dogs International, the Fair Housing Act, and the broader definition under the Air Carrier Access Act.

Oh, and State and local laws also define service animals more broadly than the ADA (Americans with Disabilities Act).

The 8 types of extraordinary assistance dogs

According to ShareAmerica, the U.S. Department of State’s platform for sharing compelling stories, there are a mind-blowing 500,000 service dogs in the United States.  

And, according to the International Guide Dog Federation, there are 20,291 Guide Dog Teams (and that's only the registered number of organizations registered) in the European Union.

That means your business has a ready-made, unique opportunity to increase its customer list.

There are 8 types of assistance dogs recognized by the Americans with Disabilities Act (ADA) and the European Equality Act 2010.

Let’s dive in and find out more about them.

Shall we?

1. Guide Dogs

Guide dogs are one of the oldest kinds of working dogs. In fact, the first guide dog school was established in Oldenburg, Germany in 1916.

You'll recognise a guide dog by its special harness that includes a handlebar for their person to hold.

Some of the extraordinary abilities of a guide dog are helping their blind person to:

• Navigate crowds and crossings
• Guide around obstacles
• Locate stairs, doors, public transport, and seats

But their most unique trait is, “selective disobedience"—the precious skill a guide dog learns to make choices based on their own assessment of a situation, it's fascinating!

2. Mobility/Disability Assitance Dogs

Mobility or Disability assistance dogs support adults and children with chronic pain, arthritis, cerebral palsy, muscular dystrophy, and spinal cord injuries to carry out daily tasks.

These tasks include:

• Help with dressing
• Opening and closing doors
• Turning lights on and off
• Retrieving objects
• Helping with balance and stability
• Carrying items in a backpack
• Pulling a wheelchair
• Barking the alert command for “Help”
• Pushing accessible door buttons

Mobility assistance dogs wear a vest with pouches for carrying small things and a short soft handle for his person to hold on to.

3. Hearing Dogs

Hearing dogs help deaf and deaf-blind people stay connected to their environments.

They do this by making physical contact with their person and by leading them to the source of the sound or away from it.

Some of the important sounds alert sounds are:

• Doorbells
• Knocks on the door
• Fire alarms, alarm clocks
• Baby's cries

4. Autism Support Dogs

Peter Kaufmann, manager of VBM Guide Dog School for the Blind and trainer of Autism Support Dogs says:

Autistic people often find it difficult to communicate and too often live isolated in their own world.

Autism support dogs create an environment of trust which leads to a more self-determined life within their community.

Specific tasks of an autism support dog include:

• Navigating and managing social settings
• Supporting and navigating doctor visits, shopping, traveling
• Managing autistic children when they wander
• Providing companionship to autistic people who have a hard time connecting with other humans.

Autism support dogs also have a harness with a soft handle including a belt that can be attached to children, (in this case, the dog's leash is always controlled by the parent).

5. Seizure-alert/Medical Assistance Dogs

Seizure-alert dogs or Medical assistance dogs are trained to recognise subtle signs of oncoming seizures.

They alert for help and position themselves in a way that protects the person during the seizure.

Their tasks include:

• placing their body between their person and the floor to break a fall
• lying next to the person having the seizure preventing injury
• providing support and comfort during a seizure
• alerting a designated person of an oncoming seizure by activating a device

6. Diabetic/Hypo Alert Dogs

Diabetic alert dogs are trained to alert diabetic adults and children when their blood sugar levels have spiked too high or dropped too low to avoid reaching dangerous levels.

They do this by:

• alerting (nudging, poking) Pressing a button to call 911 or a relative
• retrieving diabetes test kits or medications
• providing support while walking and/or helping their person stand after sitting or after a fall
• carrying objects
• opening/closing doors, cabinets, or drawers
• diabetic/hypo-alert dogs have a unique vest with pouches for carrying a medical kit.

7. Allergy Detection Dogs

Allergy detection dogs are trained to smell allergy triggers like peanuts or gluten in their person’s home but also in public places, such as shops, schools, and trains.

They indicate to their person the source of the trigger and often are trained to respond in case of an anaphylactic shock.

8. PTSD (Post Traumatic Stress Syndrome) Assistance Dogs

PTSD assistance dogs are trained to support people suffering from post-traumatic stress syndrome including people in the armed forces, emergency services, or traumatic life events. They do this by:

• distracting from a negative event
• creating space in crowded environments
• waking from nightmares, flashbacks
• leading to building exits
• finding a family member
• nudging
• pawing
• leaning

Non-certified Therapy and Emotional Support Dogs

At the moment any dog offering therapy and emotional support doesn't require any 'formal training' and they don't qualify as service animals under the ADA (Americans With Disabilities Act).

They also don’t qualify in the UK.

Which types of dogs am I talking about?

9. Therapy Dogs/Social Support Dogs

Therapy dogs are trained alongside their owners to provide affection and comfort to people in different environments such as:

• Schools
• Retirement homes
• Hospitals
• Psychiatric hospitals

At the Foundation Swiss School Guide Dogs For The Blind, owners and their pet dogs initially have to pass an entrance exam (Good Citizen DogTest ).

Then, the team completes six and a half training days, followed by a theory day that includes a written test.

Once the team has completed its training, it must pass a final test to assess the social dog's basic obedience, required reaction, and behaviour under difficult conditions including a veterinary examination.

However, therapy dogs aren't covered under the American Disability Act (ADA) or access laws in the UK and don't have the same public access rights as an assistance dog and its handler.

10. Emotional Support Dog

Emotional support dogs are companion dogs that offer emotional support to people with mental health conditions or emotional disorders. Like therapy dogs, they're not covered under the American Disability Act (ADA) or access laws in the UK.

But, Emotional Support Animals UK does offer a registration service for an annual fee.

They also have a petition that aims to bring attention to the government raising awareness of the benefits of emotional support animals and passing a law that will protect people who rely on emotional support animals for their well-being.

The truth about assistance dogs

There's surprise and delight in watching an assistance dog work.

A boundless sense of connection with their human. Then, the world opens up.

But there's more than that.

The job of an assistance dog isn't to simply support their person.

It isn't about guiding, alerting, or picking your stinky pair of socks.

It's the vital lifeline between a disabled person and the often inaccessible world we live in.

And as a guide dog trainer, it still feels like magic to me.

• How to Heal The Wounds of Ableism (And Build A More Unified Disability Community)
• 8 Incredibly Smart Types Of Certified Assistance Dogs (Plus Two Rookies)
• Struggling to Connect with Your Neurodiverse Students? Focus on These 3 Strategies, says Neurodiversity Expert Chezzy Kennedy

Struggling to Connect with Your Neurodiverse Students? Focus on These 3 Strategies, says Neurodiversity Expert Chezzy Kennedy

With a deep sigh, you enter the classroom. Another Monday. Another explosive class to survive.

You’re afraid of kids with earsplitting voices and disarming energy.

While sipping your coffee, you skim through your notebook—the best classroom management strategies.

But guess what?

Nothing feels right.

You don’t want hysterical adult screaming. You don’t want abusive discipline.

You want to empower your students, touch them with your words, and spark their belief in themselves.

So, how can you create a smooth, enjoyable teaching experience, and make your classroom the desert water hole your neurodiverse students crave?

Let’s take a look at these 3 empathy-based strategies.

1. Embrace an empathy-based mindset

I get it.

From dealing with explosive behaviour in the classroom to confronting raging parents, to the itty bitty support you get from school management—embracing empathy can feel like the tip of the iceberg.

But the truth is, neurodiverse students are often misjudged and mishandled.

For example, my son, AuADHD, struggles with sensory input and says, "It's hard to listen when you hear everything at once."

So, what's the answer?

Try to remember that behind each detention, suspension, and expulsion there's a child.

In her TEDx Talk, neurodiversity expert Chezzy Kennedy says:

“There’s no such thing as a naughty child. Just the child whose needs haven’t been met.”

This mindset has guided me more than anything else during my teaching career. It boosted my student-teacher relationship and encouraged an empathy-based mindset.

That’s why—students do well if they want to—attitude is a relationship killer.

Try—students do well if they can—and let it guide your beliefs, your actions, and communication.  

2. Identify problems with empathy

Every student is different.

The trouble is, they all share a common problem; understanding what makes their behaviour challenging.

You see, challenging behaviour creeps up when your expectations and demands outstrip the skills neurodiverse students have to respond.

Kennedy says:

“We need to understand and be ready to explore that all behaviour is communication.”

So when arguments hit the high decibel range, and negative communication spreads and destroys like wildfire—take a deep breath.

Get ahead of the noise and use empathy-based communication to deal with conflict.

Here's an example of Kennedy describing the time when a student called Henry refused to come into class.

"When asking nicely didn't work, the teachers began to threaten Henry with taking away his playtime. That's when Henry threatened to set off the fire alarms. At this point, I stepped down to Henry's level and asked him to guide me to a safe place in school, giving him control over the situation.

Henry brought me to the medical room, and I asked him what he needed to feel better. Henry said he needed to go home because his dog was at the vet and he didn't know if he was okay.

Just think about it, a whole morning wasted because the teachers focused on modifying Henry's problematic behaviour instead of focusing on the problem causing the behaviour.

Nobody cared to ask Henry the simple question, "What do you need?"

There's no denying it.

When you focus more on the problems causing the behavior instead of desperately trying to modify a student’s problematic behavior and you'll become more attuned to their needs.

3. Be empathetic

It's heartbreaking to see punitive and exclusionary discipline used in schools around the world.

Not only that, but things in the United States are cringeworthy.

According to recent research Lives in the Balance, 98,000 children a year are physically restrained and secluded.

And, 92,000 are corporally punished. And it's a nightmare for black and LGBTQ+ students.

The good news?

Research shows teachers who cultivate empathy and try to solve problems collaboratively and proactively, manage neurodiverse students' behavior better.

Fortunately, there is an evidence-based, compassionate alternative to guide you.

A great place to learn more is the non-profit organisation, Lives in the Balance.

The founding director, Dr. Ross Green advocates for compassionate, proactive, and collaborative, solutions (CPS model), and offers free resources and training globally.

His book, Lost At School and The Explosive Child has helped thousands of teachers, like me, approach and understand more easily frustrated, chronically ill, and neurodiverse students.

There's no other way to put it.

Act as a mirror and help your neurodiverse students identify their problems, then work with them to develop the communication skills they lack.

Be that warm hug, that comforts and makes them feel safe.

Invigorate your students and help them thrive

By now you may feel like things have gotten away from you.

You may wonder how to get back on track—or whether that’s even possible.

That’s normal.

But, imagine a classroom where your neurodiverse students come to you.

Imagine a classroom where your neurodiverse students trust you with their worries, fears, and challenges.

Come on. Dare to change your classroom to the desert water hole your students crave.

And, let your empathy shine, sparkle, and glow.

• How to Heal The Wounds of Ableism (And Build A More Unified Disability Community)
• 8 Incredibly Smart Types Of Certified Assistance Dogs (Plus Two Rookies)
• Struggling to Connect with Your Neurodiverse Students? Focus on These 3 Strategies, says Neurodiversity Expert Chezzy Kennedy
• How to Design Accessible Toilets For Blind People (And Create a Brand That Builds Trust)
• The Alarming Truth About Childhood Dementia (And What You Can Do)

How to Design Accessible Toilets For Blind People (And Create a Brand That Builds Trust)

In this disability-exclusive world do you ever wonder why businesses would care about accessible toilets for blind people?

I have.

I didn’t understand why businesses would think about accessible toilets when the world is packed with toilets designed for people without disabilities. 

Now I’ve learned that mindset was flawed. Phew!

You see, when I started posting on LinkedIn about accessible toilets, a new world opened up. I connected with people across the world. People who started listening to my advice—and more importantly, people who used it.

So, why is creating accessible toilets for blind people important for your business?

Let's take a look.

Creating a smooth toilet experience is like nurturing a friendship

When your friendship gets estranged, it starts to crack and break down. Talking to each other becomes harder. And perhaps the friendship might even die.

To be a trusting friend, you first create a safe space (our guide dog school's therapist recommends, being a safe space for your friend), and open the lines of communication to reduce friction and prevent frizzle.

When designing your accessible toilet, you do exactly the same.

First, you create a safe space—you eliminate barriers and replace inaccessible facilities. And then, you provide trustworthy information for a silky smooth toilet experience.

Lucy Edwards, is a UK based blind broadcaster says:

"Businesses have to meet certain building regulations like doors opening outwards which is helpful for me and Molly because if it opened inward I might get Molly's paws trapped and that would be awful."

I know what you're thinking:

But, what if my business doesn't have a blind employee or blind customers using our toilets?

According to a recent report from the International Agency for the Prevention of Blindness's Vision Atlas, Western Europe has 32.4 million blind people, and by 2050 the numbers are expected to rise to a whopping 49.7 million.

That's a lot of blind people who would feel delighted to use your accessible toilets.

For the record, here's a table showing the growing numbers of people with blindness in Western Europe, North America, South East Asia, North Africa, and the Middle East from 2020 to 2050.

Do you see how huge this is?

So, how can you design the faultlessly accessible toilets blind people so desperately desire?

Research and understand your user’s needs 

When you design with a blind person in mind the most amazing thing in the world happens.
You open yourself up and gain an understanding of the needs of blind people.

This is important when you're designing for accessibility and crucial if you're looking to create a disability-inclusive business culture. So, get to know blind people, ask them about their preferences, and listen to their perspectives.

For now, here are ten features to get you started building accessible toilets for blind people.

1. Use Braille description (tactile labels) for visual signs like the toilet door symbol, and warning signs like the fire alarm.

2. Provide audio assistance to navigate the toilet room.

3. Use contrasting colors for the door handles and door frames.

4. Use appropriate lighting. 

5. Use colour contrasting for walls and floors.

6. Provide an auditory alarm in case of a fire.

7. Provide an emergency chord alarm (not the same as a fire alarm) that is identifiable and visible.

8. Use the correct level of contrast for surface fittings and support bars.

9. Clearly define the toilet roll dispenser and provide hand wipes for blind people to quickly clean their hands before touching their cane and finding the sink.

10. Create enough space inside or outside the toilet room for guide dogs and make sure doors open inward.

Sure, building an accessible toilet can cost, but you'll get the money back as your client list expands.

And the best part is, you'll create that delightful disability-inclusive culture your employees desire.

Make your disability-inclusive business feel like a kind friend

The truth is as a business owner it's hard to neglect accessibility if you want to be inclusive.

And integrating accessible toilets is more than just offering accommodations. It's about providing services, products, and an inclusive workplace. It's about creating a brand that builds trust.

So go ahead, be a kind friend to blind people, and show the world why you're a true business leader.

The Alarming Truth About Childhood Dementia (And What You Can Do)

Maybe it’s happened to you.

You drink your coffee in the morning and watch your beautiful daughter eating breakfast.

You admire her, and laugh at the tower of blueberry pancakes she's created.

If you could stop time, you would make this heartwarming moment last forever.

Instead, you notice she seems tired. Her eyelids flicker, and she drops her fork as she falls over.

Sadly, you witnessed your first-ever seizure.

And the possibility that your child could be diagnosed with Childhood Dementia.

What is Childhood Dementia? What are the symptoms? And, what can you do?

Let’s take a closer look.

The childhood illness that exists but nobody knows about

There’s no doubt about it.

Making a diagnosis for a genetic or rare disease is challenging and frightening.

And, childhood dementia is scary.

Like a lurking thief, it robs children of their memory. It strips away their emotional, mental, and physical control. It leaves them lost in a world of their own, a place where parents can no longer reach them.

How does this happen?

It begins with a group of rare genetic disorders called neuronal ceroid lipofuscinoses (NCLs). They cause severe neurodegeneration in the central nervous system and an increase in aging pigments in your neurons.

These genetic disorders are found guilty of over 70 types of childhood dementia. The most common are Juvenile Batten disease and Sanfilippo disorder.

According to the Childhood Dementia Initiative, these complex disorders are crippling and progressive. In fact, less than 5 percent of them have effective treatments.

And, none have a cure.

The result?

Children die before reaching adulthood.

Here’s the part that’s tough to swallow.

Because it’s a rare disease, there is a lack of information and awareness leading to late or improper diagnosis and delayed treatment, but the disease is more common than you think.

The research giving insight into childhood dementia

Recent research published in Brain, The collective burden of childhood dementia: a scoping review tells us dementia symptoms typically start when children are just 2.5 years old, and the average age of diagnosis is around 4 years old, and half of all children die before they’re 10.

It also tells us:

• 1 in 2,900 children born will develop childhood dementia. 
• Only 29% of children with dementia reach adulthood.
• An estimated 91 children in Australia, 204 in Britain, and 1,077 in the US died in 2021 due to childhood dementia respectively.
• There are at least 145 terminal genetic conditions that cause childhood dementia with no cures.

On a global scale, 700,000 children and young people suffer from the disorder.

In the UK it occurs in 5–6 births every year.

Yet, in a recent survey by YouGov, only 4% of MPs said they were familiar with childhood dementia as a disease.

So, what are the symptoms of children born with childhood dementia?

The symptoms of childhood dementia

In her article, ‘Childhood Dementia Causes’, Dr. Sanchari Sinha Dutta explains how depending on the age of onset, the neuronal ceroid lipofuscinoses (NCLs) are subdivided into 4 types:

They are:

1. Congenital — it begins before or around birth, and symptoms are seizures and microcephaly, (meaning small head in Greek).
2. Infantile — this begins at 6 – 24 months, the typical symptoms are deterioration of cognitive and motor abilities, vision loss, and seizures.
3. Late-infantile — occurs in children aged 2 – 7.5 years, and the symptoms include cognitive and motor abilities, vision loss, and seizures.
4. Juvenile — the typical age is 4 – 10 years, and clinical symptoms are cognitive and motor abilities, vision loss, and seizures.

In short, just like adults, children with dementia suffer from:

• Memory loss
• Confusion
• Trouble concentrating, understanding, learning and communicating
• Personality changes
• Severely disturbed sleep
• Behavioural issues such as hyperactivity
• Emotional issues like anxiety and fear

But they can also suffer from:

• Seizures
• Loss of vision and hearing
• Loss of motor abilities
• Problems with their bones, joints, or their cardiovascular, respiratory, or digestive systems

Signs and symptoms of childhood dementia can appear at different ages.

The road to hope for medicine and families

It’s the question you secretly dread.

Is there any hope?

The truth is, despite the identification of the disturbed genes, how their deficits lead to disease pathology isn’t entirely understood.

As if that’s not enough, early diagnosis of childhood dementia is problematic because early symptoms aren’t specific, instead they are related to other neurological disorders, with no truly effective treatments to stop the progress of dementia.

It is estimated that 91 people in Australia, 204 in Britain, and 1,077 in the US died in 2021 due to childhood dementia respectively. For comparison, 92 children aged 0-14 years die annually in Australia from childhood cancer, 260 in Britain, and 1,050 in the USA.

However, in June 2023 The Department of Health and Aged Care updated its website with recent progress and plans for newborn screening (NBS) expansion.

Now, the Australian government has given free access to testing of the 5 groups of conditions, one of which can cause childhood dementia.

How to contain the emotional wrecking ball

Just imagine stepping into your doctor’s office, and she begins to explain what your child is experiencing.

Childhood Dementia.

Two words you will never forget.

You feel a crushing sense of sadness. You’re left with anxiety, guilt, and unrest.

That’s when you know you have to take care of yourself.

Dr Alessandro Simonati; a child neurologist and head of the clinical service of neurodegenerative disorders of childhood at the University of Verona, says:

‘The quality of complex care these children require is 24 hours a day.’

What does this mean?

It means you can’t face this alone. You don’t need to face this alone. You can reach out for help.

One way to do this is by creating check-ins.

Ask family and friends to visit on a consistent and regular basis. Let them ask you how you are feeling, take you out for a walk, and show you that you're not alone.

Brain research shows when releasing emotions our logical brain, functions better.

One of my favorites: Find a Listening Partner, from Hand in Hand Parenting.

It’s the priceless skill of having an adult listening partner as a way to release feelings getting in the way of being present and meeting your needs.

This means you will be more prepared to manage stress and find solutions.

Last but not least, there are life-changing organizations like Childhood Dementia Initiative and campaigns like Dementia Strikes Children Too — you can reach out.

Ok. I know what you’re thinking.

It sounds simple. But, it isn’t.

Lightening the burden of your unfathomable challenge

There’s no denying it.

One moment your heart feels like exploding from the short-lived joy of a giggle or a hug, and the next you’re so sad, you find it hard to live a day longer.

But just remember.

There is hope, and — help.

So take the next step, and— reach out.

3 Simple Accessibility Tips to Make Your LinkedIn Content Inclusive

Have you ever wondered how to write accessible LinkedIn content?

In this blog post, I'll share 3 simple tips that will help you create accessible social media content that engages and delights disabled people and makes you a trusted disability-inclusive authority.

Ready?

1. The simple art of Alt text

Do you want people with visual disabilities to glimpse inside your post?

Then promise them a generous vision.

Use alt text.

Alt text is the text you see describing an image or a graphic (like the one I have for the image above). It’s also called "alt attributes" or “alt descriptions".

It's helpful when a blind or partially sighted person uses a screen reader to view your post because they’ll know what your photo is about.

I know what you're thinking.

Can't I leave it blank?

Sure, you could let LinkedIn do its magic but do you want to risk disregarding your keywords and losing precious ranking points?

When you use alt text with your images you’re welcoming all users to understand and enjoy your trustworthy content. 

Gentle reminder: Deafblind people don't use a screen reader.

Instead, they use a braille display or speech recognition software.

So, if you want the best possible result, add alt text in the alt text box, in your post, and in the comment section.

Why in the comment section?

Because your image description might be too long.

In that case, you will not be able to add it to your post along with all the other insightful information you're sharing.

2. The inclusive hashtag

This social media accessibility tip is misunderstood and misused.

But this tip makes the difference between inclusion and ableism.

It makes the difference between getting your social media posts disregarded or

understood by disabled people.

You see, screen readers convert on-screen text (and other visual elements) into synthesized speech or braille language.

When you use accessible hashtags, the screen reader detects them and

reads them out as individual words instead of one, long and scrambled word.

There are 2 ways to create accessible hashtags.

1. Camel Case — capitalize the second letter of the second word of your multi-word hashtag like this:

#accessibleHashtag

2. Pascal Case — capitalize the first letter of each word in your multi-word hashtag like this:

#AccessibleHashtags

Accessible hashtags also help people with dyslexia or a cognitive disability to identify the patterns and relationships between words.

Gentle reminder: Avoid placing your hashtag inline because screen readers read out punctuation marks, so you can imagine what that sounds like when they're mid-post.

Warning: LinkedIn doesn’t support this feature yet and has a nasty habit of switching them back.

So, double-check your hashtags to make sure they’re accessible before you publish.

Accessibility tip: Use the text-to-speech program on your phone or the free NonVisual Desktop Access (NVDA) tool to test your hashtags.

3. The accessible Emoji

We all love the little bite-sized emotion that gives feeling to our text.

And, technically, emojis are accessible.

But, because they are read aloud by screen readers, you need to be mindful of how to use them.

How come?

Because Emojis have a Unicode string.

A Unicode string is the description you see when your cursor falls on it, and this is the code the screen reader reads to a blind or partially sighted person.

The screen reader translates the emoji’s meaning via its alt text.

So, if you add several emojis in a row, for example, the poop emoji, your audience will get to listen to “pile of poo” ten times in a row.

How can you make sure your emojis are truly accessible?

1. Use them occasionally.
2. Use them at the end of your sentence or paragraph.
3. Avoid long emoji strings (remember, the pile of poop example)
4. Avoid using them as a replacement for text.
5. Be mindful of where you place your emojis.
6. Make sure they reflect what you intend to express.
7. Double-check emojis alt text descriptions (remember, emoji descriptions vary, so check and change them if necessary.)
8. Check that assistive technology can read your emoji (not all screen readers can read them).
9. Don't use emojis to replace your message. Use them only to 'add' to the context of your text—at the end of your message, social caption, or sentence.
10. Avoid changing the color on customizable emojis because emojis with custom skin tones have extra information, so content is longer — and possibly more confusing — for anyone using assistive technology.

Accessibility tip: Learn how to use emojis wisely and double-check descriptions with emojipedia.org. The website lists all emojis, their appearances, and descriptions across platforms, devices, and browsers.

Captivate your audience with accessible content and make the work world a welcome place for disabled people.

You may feel overwhelmed.

You may even feel intimidated by Camel Case hashtags, alt text, and emojis.

But remember, accessibility is an ongoing process.

Use these 3 little things and your LinkedIn social media posts will be brimming with accessibility and you'll be on your way to becoming a more trusted disability-inclusive authority.

Are you ready?

3 Simple Ways to Test Your Social Media Content for Accessibility (and Make Disabled People Appreciate You Even More)

Do you ever try to make sure your social media content is accessible?

Can be tricky, right?

You want to get noticed—and even get clients—with inclusive social media content, but you’re not sure how. 

I get it.

In this blog post, I’ll share 3 simple ways you can test your social media content for accessibility and make your clients appreciate you even more.

Ready?

1. Use your smartphone

Did you know your smartphone has an in-built assistive technology (AT) tool that can help you test your social media content for accessibility?

That’s right. 

Assistive technology tools like Screen readers and Text To Speech (TTS) tools support blind and partially sighted people, and people with learning disabilities like Attention Deficit Disorder (ADHD) and dyslexia. 

Blind and partially sighted people in particular benefit from screen readers because the technology allows them to access information using speech, braille, or both.

Let’s take a closer look at the two most popular assistive technology tools you can use to test your social media content for accessibility.

VoiceOver on iOs 

For iPhones, the text-to-speech program VoiceOver.

How to set it: 

1. Go to Settings and scroll to Accessibility.

2. Choose the first option, VoiceOver, and tap toggle “on”.

3. Here's where you can set the speech settings like the type of voice, pitch, and speaking rate (speed).

When you’re done you can switch VoiceOver on/off by triple tapping your iPhone’s Home button. You'll know the feature is working by the audible ‘VoiceOver on’.

Now when you touch the screen or drag your finger over it, VoiceOver will speak the name of the item your finger is on, this includes icons and text.

Each icon or button you select will have a green box around it, called the ‘active icon’.

You can use VoiceOver gestures when you want to interact with a button or link or to navigate to another item.

If you want more information on how to use VoiceOver, Apple has a list of YouTube videos on VoiceOver and other iPhone accessibility features.

TalkBack on Android

For Android users like myself, there’s TalkBack.

There are three ways you can enable TalkBack. You can use the volume key shortcut, Google Assistant, or by accessing your device settings.

Let’s start with your device settings. 

How to set TalkBack in Settings: 

1. Go to Settings and scroll tap Accessibility.

2. Scroll and tap TalkBack.

3. Use TalkBack, toggle on.

How to set TalkBack with Phone Volume Keys: 

Press and hold the Volume Up and Volume Down buttons simultaneously for three seconds. An audio message should play stating that TalkBack is on.

How to set TalkBack with Google Assistant: 

Open Google Assistant > Say, "Turn on TalkBack" to activate.

Accessibility tip: First activate your phone’s voice assistant to ensure you can turn off text-to-speech if you get stuck.

2. Reach out to disabled accessibility experts

Reaching out to disabled accessibility experts like Krista Giannak and Mede Akran is by far the most reliable way to make sure your content is accessible.

Why?

Because disabled people depend on accessibility. They have first-hand experience with going online, using assistive technology, and experiencing the barriers of inaccessible content.

They also stay up to date and can perform functional testing.

And another thing, accessibility experts also offer services such as digital accessibility training, assistive technology training, and marketing communications support.

All you have to do is reach out.

3. Get in touch with disability and accessibility consultants

Disability and accessibility consultants are experts who can assess your digital accessibility, perform manual and functional testing, and guide you to create a barrier-free social media presence.

They either have first-hand lived experience or they work in a team with disabled people. An example of such is the web design agency Access by Design.

And another thing:

It's possible your business or organization is making itself more accessible and has or is building its own accessibility team.

Captivate your audience with accessible content

You may feel overwhelmed.

You may even feel intimidated by Camel Case hashtags, Alt Text, and test-running for accessibility.

But remember, accessibility is an ongoing process.

Armed with the knowledge in this post  — and a burning desire to squeeze every accessibility tweak out of your social media content, — you’ll be well on your way to strengthening your brand identity, building brand trust, and maximizing marketing potential with the disabled community.

Ready to get started?

• How to Heal The Wounds of Ableism (And Build A More Unified Disability Community)
• 8 Incredibly Smart Types Of Certified Assistance Dogs (Plus Two Rookies)
• Struggling to Connect with Your Neurodiverse Students? Focus on These 3 Strategies, says Neurodiversity Expert Chezzy Kennedy
• How to Design Accessible Toilets For Blind People (And Create a Brand That Builds Trust)
• The Alarming Truth About Childhood Dementia (And What You Can Do)

No Accessibility In Your Business Culture? Focus on Inclusion Instead, Say These 3 Global Disability Experts

It's not your fault.

You’ve worked hard to create a culture of accessibility in your business. 

You’ve built an accessible and usable website. Provided designated parking spaces, and accessible toilets.

You even have a flexible work policy.  

But now you’re not sure. 

You begin to recognize that accommodations don’t mean accessibility. They don’t mean your workplace is inclusive. 

And you wonder, how can you change it? How can you focus on the person rather than the disability? How can you build a strong empathetic culture of accessibility?

I asked three global disability experts and here’s what they said. 

Are you ready? 

1. Be proactive with your accessibility mindset  

It’s true. 

Our business world views accommodation as accessibility. 

We believe when we respond to the requirements of disabled people we’re creating an inclusive workplace. 

But here’s the interesting thing.  

Accommodation is your answer to a person's individual requirements. It’s reactive. It’s the little adjustments you make after a disabled person has opened up and told you they’re disabled. It’s not accessibility. 

Think about it. 

Imagine sitting with your colleagues at the campus cafe. You’re enjoying the cool shade after a successful team-building meeting. You’re drinking an ice-cold frappe and enjoying the Rhein’s elegant beauty.

You decide to go to the bathroom and ask for directions. But the doors to the toilet are not built with accessibility in mind. And your guide dog can’t read. 

So you stand there thinking, which door is it? 

Now, if the toilets had been designed with accessibility in mind, they would have contrasting door handles and frames so you’d know where they are and how to open them. And, a Braille description would be there to translate visual signs.  

Instead, you have to go and ask for help. 

You may be wondering, what does this have to do with your inclusive business culture? 

I'm guessing, when your disabled employees need an accommodation they'll have to ask. 

How do you think they’ll feel? 

That's right.

They might worry. 

They might think, what if I’m stigmatized? What if I’m not accepted? Or worse, what if I lose my job? 

How can you change that? 

I caught up with Haben Girma a world-renowned disability rights lawyer, author, and speaker, and here's what she said.

“Start by partnering with an accessibility consultancy to train your team. Keep learning these skills and soon you will become experts, too.” 

Want to see how this works? 

First, take the initiative and measure your data and metrics to identify where your gaps are. 

Second, make sure all your staff have access to the resources they need to feel disability-confident.

Third, get out and hire people with disabilities. Contact colleges and universities. Engage with groups that support disabled people and build a sure-fire recruitment channel. 

Finally, like a flourishing garden design your systems, your processes, your training and development tools, and your workspace in a way that makes everyone feel welcome.

You see, when you invite your business to embrace and support the culture of accessibility the most amazing thing in the world happens.

You open the door to empathy for people with disabilities in the workplace. And that’s when you know no one in your workplace is left behind because of their disability. 

But how do you make sure everyone is included? 

Let’s take a look, shall we?

2. Stop ignoring disability in your inclusion policy

I won’t lie to you. 

Diversity and inclusion are broad, hard-to-swallow topics that often require specialist knowledge.

Without guidance, many businesses don’t know where to start. 

Sure businesses everywhere are quacking like ducks promoting their diversity and inclusion but did you know only 4% consider disability in their workplace policies? 

In a recent interview, Caroline Casey, founder of the Valuable 500 said:

"Although 90% of companies claim to prioritise diversity, only 4% consider disability in this definition, and only a small subset truly serves customers with disabilities."

Don’t be one of them.

Diversity is your company welcoming employees from a group like race or gender, ethnicity, religion, nationality, or sexual orientation and wait for it… 

Disability.

That’s right.

Inclusion is for everyone. It’s not a pick-your-favorite ice cream flavor of the month. You either do inclusion or you don’t. 

So, how can you ensure disability inclusion? 

Meryl Evans is a global voice in the disability community. She’s a professional speaker and trainer on diversity, equity, and inclusion (DEI) with a focus on people with disabilities, accessibility, and accessible communication.

Here’s what she said. 

Many people say: "Diversity is being invited to the party. Inclusion is being invited to the dance floor". I disagree. Diversity is being invited to the party. This is where the company hires the employee. But, it's not inclusion yet because inclusion includes providing accessibility. Inclusion is being on the party planning committee. 

This means, the company delivers on employees' accessibility requirements that help them thrive in their roles. It lets disabled people bring their full selves to the table, and encourages them to use their voice and lead.”

You see, it’s your choice if you want to foster that culture of inclusion where your employees can feel like they’re part of something bigger.

3. Understand the requirements of your disabled employees

Did you know a manager is responsible for 70 percent of team engagement? 

That’s right. 

Managers build connections. 

And, as a company leader, you’re the key player in supporting your disabled employees to feel at home.

What do I mean?

My friend Petra was born blind and has a guide dog. I used a wheelchair to go to work after a motorcycle accident, and Till, an autistic student, needs a quiet space where he can recharge during our class.

Think about it.

You can be born with a disability. An injury or illness can cause a disability. 

But, learning, attention, mental health, and chronic pain are also disabilities.

So, while some disabilities are obvious or have obvious physical characteristics, most don’t.

Heck, your coworker could be struggling with depression, anxiety, or chronic pain and feel isolated because people around him judge and ridicule and you wouldn’t have a clue.

And you know what else? 

1 in 4 disabled people have two impairments and 1 in 10 have three or more. 

Most likely your employees desperately need certain requirements in their workplace and aren’t getting them. 

What can you do? 

Anna Maria Gertsou, co-founder of Lara Guide Dog School, has a history of working in the non-profit organization management industry. She's a clinical psychologist skilled in Psychological Research, Cognitive Science, and User Interface Design. She's also the first blind woman to introduce guide dogs to Greece.

Her view is extraordinarily simple.

"Invite your employees for a delicate cup of coffee and find out exactly what they’re struggling with. Understand their feelings. Then, show them how your workplace is for them. And, share your best advice to help, guide, and support them."

The truth about building a culture of accessibility into your businesses

By now you realize a disability-inclusive culture is not about the website a blind person can access.

It’s not about the building a person using a wheelchair can get into.

And, it’s not about the ramps, the designated parking spaces, or the accessible toilets.

If you want to build a culture of accessibility into your business you need to reach out to disabled employees. 

Connect with them and support them.

Go on. Pick up the courage and get started.

Be the disability-inclusive leader of your tribe.

And keep moving forward.

An Open Letter to Anyone Who Thinks Their Disability is a Cause for Inaccessibility

When you see non-disabled people move around a city, what do you think?

Do you want to move around like them? 

Do you feel embarrassed by the way you use your cane? Do you feel disheartened by the divide between the way you stumble along the hazardous sidewalks and the smooth way you’d like to walk?

Most blind and partially sighted people are unhappy with navigating the streets.

They agonize. They despair. They feel drained.

Navigating the non-disabled world may feel like sailing rough seas. 

Imagine setting sail for the weekend with a clear mind full of optimism.

You dream of basking in the evening sun, gobbling up a heart-warming meal of pasta, courgette balls, and feta sprinkled with olive oil and oregano. 

But instead, you see threatening clouds closing in and begin to worry. So, you give yourself a good team talk, hoist your sails, adjust your heading, and sail into the wind. 

Each nautical mile feels excruciating. Your sailboat is taking a beating. Tall waves want to break you and breakfast wants to come up. 

When sailing through a storm your destination can feel like a miserable experience.

Catarina Riviera, a deaf/blind DEI consultant, and public speaker recently posted on LinkedIn about her travel experience in Mexico City on LinkedIn.

First, she talks about the difficulty of navigating curbs.

“Walking around Mexico City was hard because many sidewalks aren't flat. There were ups and downs, holes, poles, uneven concrete, gaps, stones, and more. There were some curb cuts, but it wasn't consistent.
Curb cuts help me cross the street more easily and feel less stressed about possibly tripping. Walking in this environment required me to concentrate more and use my white blindness cane rigorously.” 

CataRina Riviera

Then, she goes on to tell us about her difficulty with pedestrian signals. 

“Many intersections did not have pedestrian signals for when to cross, so I was relying on walking when it was red for the cars. As a blind woman, I had trouble finding the traffic lights and sometimes waited for a whole cycle before actually walking.
Some intersections didn’t have traffic lights at all, so I had to check for cars and bicycles and then decide when to cross.

Navigating inaccessibility drains my energy and makes me more tired."

Catarina Riviera

Why does Catarina share this with us? 

She says it’s because she wants to illuminate these moments of being disabled in an inaccessible world. And, to bring more awareness to the need to be inclusive.

She also says, that in every community, city, workplace, etc., there are disabled people expending extra energy to adapt.

And, she feels for them.

And you know what?

This conforming to the inherently ableist world happens every day. 

So what’s the answer? 

Become your own accessibility champion

Imagine growing up with no disabled models to empower you.

No disabled Cinderella or Superman to look up to.

How would you feel?

Frustrated. Discouraged. Isolated.

In her post, “How Can Attidutes Change Towards Disability?”, Rachael Mole, founder of SIC, challenges us to step outside our comfort zone and support each other.

I like the idea.

For example:

• Support fellow disabled entrepreneurs, fashion designers, actors, and athletes by following them on social media, sharing their messages, or buying their products. 

• Reveal your own accessibility journey, the peaks, and valleys

• Celebrate the success of other accessibility advocates in the workplace and beyond

• Create your own accessibility champions network 

Why is this important? 

Because self-defeating behavior often creeps up like a shadow. But we can overcome it and grow a community of accessibility advocates to illuminate how accessibility impacts and connects us all. 

What do I mean?

Grow a community of accessibility advocates

Last year I decided to go on a mission. My goal was to connect with people on LinkedIn who share the same values and beliefs about accessibility and inclusion.

Like a stranded sailor, I craved the opportunity for a cozy chat with allies and supporters who get what it feels like to stand up to ableism and fight for disability rights. 

That’s when I discovered the pulsating disability advocate, Debra Ruh.

Debra explained that when her daughter, Sara, was born with Down’s Syndrome, experts made a mistake. They said her daughter would be lucky to push shopping carts at the local grocery store.

But Debra refused to accept this. 

Armed with the love for her daughter she went on a quest to show the world the power of human potential, and in 2013 she started the social enterprise, Ruh Global IMPACT.

Now she had the power to focus on disability inclusion by working with major multinational corporations, the UN, and foreign government agencies.

But that’s only half the story.

With strategic planning, marketing, fostering smart cities, and accessibility, Debra’s efforts led her to create an oasis for people with disabilities.

The empowering organization, Billion Strong.

Now, billions of voices of people with disabilities come together armed with the power of inclusion. 

Do you see where we’re going with this?

Here’s another simple, yet powerful example recently posted on LinkedIn from the founder of Access By Design, Clive Loseby on web accessibility.

“I’m on a mission to make the world accessible one website at a time. And, I have an amazing team of disabled people who help me with every website accessibility audit I do, because it is the only way to get a true understanding of the accessibility issues there may be with a website.”

Clive Loseby

Do you see how huge this is?

Disabled people coming together to create their own accessibility community.

I demand disabled people are recognized as being thought leaders in their own right. 

Why is this important?

Because disability is Human.  

Empower your identity

Each of our paths to disability awareness will be unique, but the outcome will be the same; an inclusive and accessible world for all.

Most of all we will be surprised to learn that the accessibility we long for is here waiting for us. It’s been our prerogative all along. 

We just need to unlock it. To access it. And to share it with the world. 

• How to Heal The Wounds of Ableism (And Build A More Unified Disability Community)
• 8 Incredibly Smart Types Of Certified Assistance Dogs (Plus Two Rookies)
• Struggling to Connect with Your Neurodiverse Students? Focus on These 3 Strategies, says Neurodiversity Expert Chezzy Kennedy
• How to Design Accessible Toilets For Blind People (And Create a Brand That Builds Trust)
• The Alarming Truth About Childhood Dementia (And What You Can Do)

How to Speak to a Disabled Person With Confidence

Oh my.

Have you ever felt awkward when you met a disabled person? Have you ever wondered how you should react?

What should you say?

We’ve all been there.

Now, there are many enlightening pieces of advice out there showing you ‘what to do’.

The downside?

Most come in the form of a poster.

They can educate you on the mechanics of disability, what to do, and what not to do.

Read through them, and you can learn how to communicate with a disabled person.

Heck, you might even do something that wins you extra brownie points like helping a blind person cross the street.

But if you dig deeper, if you want to know how to speak from the heart with confidence, cut through the noise, and even become an advocate, you need something better than a hackneyed cliche ‘What to do’ post.

You need a complete guide.

In this post — this complete, step-by-step guide — I’ll share tips to help you talk about disability with confidence so you can connect with disabled people.

You’ll also learn the secret to unlocking empathy, creating life-changing relationships, and motivating people to see disabled people with an open heart; for who they are.

People, like you and me.

Ready?

Let’s get started.

3 trustworthy ways to learn disability-etiquette

1. Understand your hidden fear of disability

Ever found yourself talking to a person with a disability only to feel tense and flustered?

We’ve all been there.

Talking to a disabled person can feel like an unfamiliar and uncomfortable place. This dark place is your self-doubt, your lack of confidence, your fear of being separate from this person and suddenly having to deal with it.

And the result?

Feeling afraid of disability.

Feeling awkward.

Why does this happen?

For one thing, because you don’t see the human being in front of you. You focus too hard on the disability. Then, you label disability as different. Less-able. Fragile. Bad.

And, bad is scary.

Well, one thing’s for sure: You’re not alone.

Did you know 1 out of 3 people thinks having a disability makes you less happy and less productive?

But hang on a minute. Where does this come from?

Let me tell you a little story.

When Anna was 5 years old, her dad’s friend came to ask for a guide dog. He was a towering man, with a big face, and cloudy eyes. He used a cane when walking, and wore large dark sunglasses. Anna was scared of him. “Don’t stare at him, it’s rude! Look away!” her grandmother said.

But, she couldn’t help herself. She wanted to stare. Because when you’re a kid, you want to try and understand why someone has a body different from yours. So, Anna grew up afraid of disability. She learned disability is something you don’t acknowledge, it's something to avoid. And, she realized people think that too.

What might surprise you is that I left out a piece of the story.

It’s the part where I was Anna and instead of ignoring disability, my father asked me, ‘Do you know why his eyes are different? ‘Because Petro has an eye disease that stops him from seeing well. His cane helps him to see when he’s moving around. Now, he would like a guide dog to help him zip through the city.'

In short, the more time we spent together the more I learned Petro was a million laughs, not scary.

He taught me all about canes, how a blind person gets around, and even how I can magnify my senses, and see with my ears.

And that’s when the most amazing thing in the world happened.

A glorious seed was planted.

A seed that grew to shape my attitude. My actions. And, my perception of disabled people. A seed that took the place of discrimination, and prejudice, and closed the door to ableism.

And you can plant that seed too!

By now you’ll have realized how you see a disabled person springs from your limiting beliefs. A set of beliefs placing a greater value on non-disabled people, and a lower value on disabled people.

So, when you’re staring, instead of looking away, ask the person next to you the simple question. You’ll be surprised how it will give you permission to engage in conversation and learn that disability is ok.

2. Control the power of words and wipe out ableism

According to the Urban Institute, 4 in 10 adults with disabilities experience unfair treatment in healthcare settings, at work, or when applying for public benefits.

If the sight of a disabled person makes you feel uncomfortable, sit with your feeling.

And like a detective, investigate the root that gives rise to the awkwardness, and leads to ableism.

What is ableism?

Ableism is when your belief system says your abilities are superior to a disabled person. It’s when you think disabled people are less than.

But that’s just the tip of the iceberg.

Why?

Because our society wasn’t created with disabled people in mind, and the world we live in, is at its core 'ableist.'

In fact, ableism has been lurking in our belief system for an outrageously long time. It’s the disfigured face of discrimination, the brutal side of social and financial injustice, and the primitive stage of inclusion.

And, the rotten roots of ableism run deep.

They feed off downgrading limiting beliefs.

They invade malnourished parts of our society and twine their way into daily life taking many forms.

How?

Here are a few ways:

​Lack of compliance with disability rights laws

• Buildings without braille on signs, elevator buttons, etc.
• Buildings without accessible entrances, rooms, etc.
• Supermarkets without braille on aisles, or inaccessible entrances
• Inaccessible websites
• Refusing to provide reasonable accommodations
• Refusing to provide access to public transportation
• Punch-line disability or mocking disabled people
• The belief disabled people need to be healed
• Dividing disabled students into separate schools
• Using restraint and seclusion to control disabled children
• Exposing disability as inspirational or tragic in news stories, movies, and other popular forms of media
• Making a movie that doesn’t have an audio description or closed captioning
• Casting a non-disabled actor to play a disabled character
• And that’s just part of the story.

Disrespectful ableist actions

• Talking to a disabled person like they are a child, or not talking directly to them, or speaking for them
• Thinking people must have a visible disability to be disabled
• Questioning if a person is disabled, or ‘how much they are disabled
• Using a mobility device to lean or rest
• Choosing an inaccessible place to meet
• Wearing scented products in a scent-free environment
• Using the accessible bathroom when you don’t need to
• Making a movie that doesn’t have an audio description or closed captioning
• Casting a non-disabled actor to play a disabled character
• Asking invasive questions about medical history or personal life without permission

Obnoxious little-known ableist insults?

I know you don’t mean to be insulting. And, you probably have good intentions.

But even your well-meant comments and actions can have a negative effect on a person with a disability.

Little-known ableist insults communicate a negative message about a person’s disability.

Here are some examples of what I’m talking about:

• “I don’t even think of you as disabled.”
• “Can I pray for you?”
• “I’m super OCD about how I clean my house.”
• “That’s lame.”
• “You are so retarded.”
• “Wow! That guy is crazy.”
• “You’re acting so bipolar today.”
• “It’s like the blind leading the blind here.”
• “Her ideas fell on deaf ears.”
• “He’s such a psycho.”

Can I be painfully honest with you for a moment?

The simple truth is when you speak like this you’re saying a disabled person is less than. You’re communicating disability is bad, and negative, and it’s a problem in need of a fix.

So, how can you communicate in a well-respected way?

How can you speak about accepting disability as a normal, inevitable part of life?

Let me show you.

3. Use compassionate disability-inclusive language

Disabled people have the right to choose how they talk about their disability.

There are 2 ways to bring up disability:

Person-first language (PLF)

This means you put the word ‘person’ before you mention disability.

For example, ‘He is a person who is blind.’

When you use Person-first language you recognize and accept a person who has a disability is, indeed a person.

And get this, it also sends the message of separating the person from the disability.

My point?

You’re respecting the identity of someone with a disability.

Identity-first language (IFL)

This is when you lead with disability.

For example, ‘disabled person’, or ‘She is a blind woman.’

This way, you recognize disability as a part of their identity.

In short, think of how you feel before you speak, and the kind of message you want to deliver.

Then, like a good friend ask with an open heart, and be fair.

Become a power-up voice of authority for disability

Lack of knowledge, understanding, and outdated attitudes are some good reasons why the whole world seems uncertain around people with a disability.

Don't let this be you.

Trust in yourself to build life-changing relationships with disabled people. You are on a mission to attract, energize, and motivate people around you to see disabled people with an open heart; for who they are.

People, like you and me.

I'm ready. Are you?