It is expensive to have a disability.

Yes, I know you didn’t know about this , but it’s true

While some of the costs are direct, such as assistive devices, costs of caregivers others are indirect and hidden such as inaccessibility, discrimination and unemployment.

Having a disability means you need to spend more to be on the same footing as someone without a disability or you lose income because of your disability.

Yet most adult PWDs are not employed and the majority of children with disabilities come from poor families, therefore most of the PWDs must rely on charity from family, friends, charities etc.

Because the bills don’t pay themselves I have been thinking about this post in relation to the average Ugandan.

The low income earner in Uganda who barely lives hand to mouth more especially since COVID-19 pandemic and its consequences hit.Lord help us

But what about the average PWD who actually is the best representation of #omuntuwawansi.

Do you ever think about how they survive in this life?

I will use myself( because I want to be authentic in my presentation) and I know I definitely don’t represent a mother with a disability deep in the village BUT all I need is for you to draw a comparison between my life and yours. That I need proportionally more money to live the same way as the average person my age who has no disability

I need;

• A FULL time personal assistant to help me around at home or when I am at work and this includes pushing me in my manual wheelchair.

• Public transport doesn’t cater for wheelchair users (Meanwhile Boda Boda’s the preferred transport means for PWDs, cost an arm and a leg, literally ) 

• Orthopedic products for my brittle bones.

• Mobility devices such as crutches, walking frame.

• An adapted bathroom / commode/ bedpan/ ‘potty’.

• Pain medication for my chronic issues.

• Feminine and personal grooming products.

• I need a smartphone, airtime, data costs and OTT to stay connected with friends & family.

This is what I basically need to function as an adult .

You may think I don’t need all those things but I haven’t listed anything luxurious. Just basic needs.

You will realize that these NEEDS will also depend on the severity and type of the disability one has.

Things like catheters , stoma bags and urine bags , drugs for UTIs for people with spinal cord injuries .

Assistive devices, such as screen readers, crutches, powered wheelchairs and medical devices are TOO expensive.

Some children need therapy ;rehabilitation or physical, special needs education etc.

Most of us need psychosocial support where Talk therapy goes for about 70k an hour.

How many PWDs can afford this?

We should NOT trivialize the need for mental health support.

Then the cost of being away from work in my case is hidden and this goes for caregivers too , who are usually family members that lose income while caring for loved ones.

My sister, Aminah has had to take a leave from work for a month now , so she can nurse me..

My point was, that if someone like me who is privileged stretches to make ends meet, what of the rural woman with a physical disability, and with mouths to feed.

She needs her land tilled, her livestock looked after, she needs cash to pay for her expenses.

How is she scraping by?

I don’t have all the answers but I want us to discuss how we can transform the lives of those within our communities that are less fortunate .

Can our government’s mainstream disability be in all existing programs?

How can businesses be subsidized to offer services and products that are affordable to PWDs?

How are government programs on disability implemented, monitored?

Can our leaders feel the burden of a child with a disability or the needs of a jobseeker with a disability?

How can families and communities rally to look for sustainable solutions beyond the charity model?

What potential solutions do YOU have to address the plight of Ugandans with disabilities?

We shouldn’t be #forgotten not #leftbehind

Finally, What extra costs do you incur as a PWD?

Please let me know in the comments below.

Hoping for a brighter tomorrow, xoxo

#Brittlebonesdiary #Extracosts #struggleisreal