Samantha LenkeMetro ColumnistPublished on April 29, 2021 at 4:16 pm | Updated on April 29, 2021 at 5:04 pm
As a woman with a disability, I have struggled to juggle all of life’s responsibilities. (Photo: Samantha Lenke)
The other day I was in the shower and cried my heart out.
The past few weeks have been difficult, with stress, anxiety and pent-up frustration overwhelming me.
The fear of what I might have to do consumed me, and I cried for 20 minutes while my cat, Lola, perched in the laundry basket, looked at me with a confused and, as cats often do, slightly critical look.
“Being disabled is a full-time job!” I announced to Laura, who continued to groom herself, oblivious to my outburst of frustration.
I’m just exhausted. I usually sleep well, but lately I can’t switch off because I’m thinking about the work I have to do. I even bought a diary when I got back to London recently, because I knew life back home would be tough. On the cover it says “Pull yourself together!” I hope it will motivate me.
The truth is, as a woman with a disability, I have struggled to juggle all the responsibilities in life.
Being disabled means not only are you responsible for looking after your own health and wellbeing, but you’re also responsible for the mountain of paperwork, or “clipmin'”, required to maintain your independence.
Add to that the fact that we have jobs, social lives and the constant pressures of navigating a disabled world where we often have to proclaim our worth and values in order to be accepted and included.
All of this comes on top of dealing with chronic pain, mental health issues and a lack of support whilst facing ignorance and a total lack of sympathy for their daily plight from society.
The restaurant advertises itself as handicap accessible, yet there is a step at the entrance, showing a lack of common sense about what life is like for disabled people. This shows how little people know about disabilities, and this ignorance is systemic.
People with disabilities often live in fear that they will not get the support they need. (Photo: Samantha Lenke)
This is something deaf and disabled people rarely talk about: we are expected to just get on with it because we are portrayed as inspirational and tenacious in society.
Or, on the other hand, we are seen as a burden on society, welfare parasites who milk the system for an easy life.
I can attest that regular battles with the DWP, living in fear that the support I fought for and won may be withdrawn, and having to reveal my most personal details just to receive funding for a wheelchair or support to get to work, are far from easy.
It’s exhausting, humiliating, and a full-time job that often means one’s dreams and hopes are compromised. Recently, my “crippling” has taken over, causing me to miss work appointments, neglect friends, affect my sleep, and even cause a stress fracture in my elbow. All of this culminated in me collapsing in the shower.
How did we get to this state? It started with me trying to find a new secretary to hire to maintain my independence through the Direct Pay system. As the employer, I am responsible for creating work schedules, managing timesheets, paying wages, and now interviewing new candidates and training them for the role, as well as managing the taxes associated with employing a secretary. I am still searching for someone new to fill the role.
Then there’s equipment maintenance. I use both a manual and powered wheelchair and, like a car, wheelchairs need maintenance. Last week both castors on my manual wheelchair broke. Missing ball bearings are a common sign of wear and tear. For £160 I should have new wheels on my way soon; I just need to find someone to help me fit them.
The skills needed to live with a disability are invaluable. (Photo: Samantha Lenke)
Then earlier this month, whilst out to lunch and grocery shopping, my power wheelchair got stuck at a junction and I was stuck on the roundabout in Old Street for over an hour. I was finally able to get in touch with the company that provided me with the wheelchair, who were able to show me and my PA how to fix it.
Thanks to this ordeal and kind words from the Deaf community on Twitter, I learned about wheelchair breakdown insurance, and after another half day of paperwork, I received full coverage insurance from a private company.
For me, technology is a lifesaver. I rely on it every day, including the smart technology in my home that is easy to access. But right now, one of our automatic windows isn’t working, our hydraulic cooker won’t open or close, and we have “simple” maintenance issues that take hours or even days to resolve.
Then there are doctor appointments, and if you have physiotherapy, occupational therapy, or, like me, counselling or cognitive behavioural therapy, these have to be fitted in with other daily priorities.
I often wonder what a job advert for “disabled living” would look like.
First, you need to be able to multitask, have good time management skills, understand medical terminology, and be able to think outside the box, because the elevators in the station might not actually be working, and you won’t realize that until you arrive.
You will have to be diplomatic, because you will routinely encounter discrimination, ableist attitudes, and microaggressions, such as being assumed you cannot think or speak for yourself, being treated like a child, or being asked intrusive questions about your disability (including your sex life).
The ability to understand legal frameworks is desirable, plus the ability to fill out paperwork while fighting for civil rights and the patience to educate non-disabled people are essential.
Leaving the house will make you feel like you have to overcome countless obstacles just to get a pint of milk, and you will be expected to fix your own wheelchair and ask strangers for help.
They do all this whilst juggling everyday household chores such as cleaning, cooking, childcare and maintaining relationships with partners and friends, all without any training and little financial or emotional support.
This may sound ridiculous, but I am serious: the skills required to live with a disability are invaluable and should be bottled and sold at a high price.
But people with disabilities are still often overlooked, and employment statistics for people with disabilities are pretty dire: A report released by the House of Representatives this month found that the unemployment rate for people with disabilities was 8.4% in October-December 2020, up from 6.9% the previous year.
Attitudes towards deaf and disabled people are still often outdated: we are still seen as a burden rather than an asset, our access needs as privilege rather than a basic right, and we are still seen as unable to be mothers, lovers or CEOs of companies.
Although I often feel overwhelmed as a woman with a disability and even bitter at times about the challenges I have to overcome, I believe that the experience has made me a stronger person when it comes to living and working independently.
And yet the impact on my mental and physical health is something no one should have to go through, especially when it comes with so much unavoidable paperwork, such as eliminating the habitual reassessment of disabled and chronically ill people who don’t miraculously become disability-free overnight.
Or we could simply have a fairer system at local government level. No matter where you live, you should be entitled to a support package. I would have benefited greatly from even some training in school on how to live with a disability.
The only way I’ll get through these tumultuous weeks of clipmins is to feel proud of my accomplishments, and I know that through my experience I can impart some advice to others to help ease the stress that comes with it all.
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More: I don’t want to be your inspiration porn
Continued: If you’re interested, ask me about my disability, but don’t be condescending.
Plus: Touching a disabled person without permission is not “helpful”
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