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What can a person suffering from cerebral palsy do on their own?

Aleksandra Pietrasz
Dec 18, 2020

Introduction

Have you ever heard of cerebral palsy?  

What do you think people born with this disability are struggling with? 

Cerebral palsy (CP) is related to a neurological disorder which can be detected in infancy or early childhood. This disability is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement, maintain posture and balance.

*If you would like to get to know more about this disorder, I encourage you to read the article about Cerebral Palsy: Hope Through Research, which was published by the National Institute of Neurological Disorders and Stroke.

One of the varieties of CP is four limbs cerebral palsy which my interviewee was born with. (In order to keep her anonymous, I will use an alias, Lisa) In Lisa's case, upper limbs were impaired only partially, therefore, she can still use her hands to do a lot of basic things. Unfortunately, even simple activities require Lisa’s patience and determination because some tasks are more demanding and produce additional muscle tension, while others take her much more time than they would for people who don’t suffer from similar disabilities. 

*Please bear in mind that the level of limb impairment differs depending on a person. 

How does Lisa cope with daily life?

As long as she can remember, Lisa has been moving around in a wheelchair. When she was a kid, Lisa wanted to attend public school. Unfortunately, at that time only special needs schools could accommodate wheelchair users. No public school has provided any alternatives to stairs, therefore most headmasters dissuaded Lisa's mum from enrolling her daughter at public school. 

Lisa said:

“Not enough accessible buildings, streets and public spaces are something that I face almost every day.” 

What does Lisa do before going out on her own?

She always checks her journey on Google Street View - this app helps her a lot, though of course it is not infallible. Unfortunately, locations are not updated regularly enough, hence sometimes the street view doesn’t provide correct information regarding the accessibility of a place. Another problem with this app is that the pictures are not clear enough, which makes it impossible to estimate the height of kerbs.

In the picture below you can see two points where estimating kerbs is not a piece of cake. For Lisa, who uses an electric wheelchair each centimeter is relevant.  

screenshot from google street view


The next really interesting part of this interview turned out to be the fact that not all of the public toilets are sufficiently accessible. Many have not been adjusted to disabled people, despite the fact that all of them should meet these requirements. 


So, where have the architects made mistakes?

Please look at the picture below. What do you think of this toilet? 

example of toilet which is not enough accessible


Do you think there is enough space for a wheelchair?

Do you think that the soap dispenser and the towel machine have been placed at the correct level?

Precisely! A well designed toilet should contain:

  • Enough space on both sides of the toilet, because wheelchair users should have the possibility to approach it either from the right or from the left. 
  • Enough space under the sink so that disabled people can fit there comfortably - otherwise, using the tap may require additional effort on their side. (not all wheelchair users are able to bend themselves!)
  • Mirrors, hangers, soap dispensers and towel machines or hand dryers which are placed at such a height that a seated person can use them without additional difficulty.
  • Enough room in the toilet for wheelchair users to move around freely. 

As mentioned above, Lisa's hands are partially impaired, therefore since primary school she has been struggling with writing. This activity still takes her a lot of time, even after years of practice. For instance, the time she needs to finish writing 3 sentences would allow other people to finish 15 or more. Her writing style is not clear either, which is why sometimes she has to rewrite the same sentence.

Lisa shared that she can use both mouse and keyboard while operating a computer. Everything that I expected would be a problem was not actually a big challenge. Instead, Lisa told me that people with CP usually suffer from a concomitant disease, which in Lisa’s case is poorer vision. For that reason, she needs bigger fonts and prefers fewer words in each line of text. Additionally, enhanced contrast between the font color and the background color for her makes reading easier. 

Long and repetitive actions lead to fatigue and muscle tension, therefore, Lisa likes to write neither on  the computer nor or the mobile phone, Whenever it is possible, she records her voice messages. Despite her disability, Lisa prefers to discover everything in person.
When I asked Lisa what her dream was, she answered

“I’d love to live in a city where every street and every building is designed so that all disabled people can access them without an assistant.” 


Independence is really important for Lisa, so she has been spreading awareness about the disability among people so that others could start to build cities without limits.

Summary

Finally, I would like to come back to the question from the title which I asked Lisa during our interview. "What can a person suffering from cerebral palsy do on their own?"

She said:

“A lot of things, provided two conditions are met. Firstly, the person with CP has to have quite functional hands. Secondly, cities, buildings and public transport have to be designed in an accessible way.”

Lisa believes that a lot of things could be done much better if someone carried out usability tests with wheelchair users during the design and construction process. That could eliminate a lot of mistakes and shortcomings, and would probably be cheaper than to rebuild readymade city spaces and buildings and adapt them once again.


The interview with Lisa has opened my eyes in regards to a few things.

Firstly, the understanding of a disorder by name may be misleading. In this case, many people think that people who have struggled with CP can not do anything. Nevertheless, the truth is that a lot of people who suffer from this disorder have partially functional limbs and so they can work, learn and do many daily activities to live more independently.

Secondly, a lot of public space and buildings which at first glance seem to be accommodated to wheelchair user's needs are unfortunately not. Often, people who create and build these spaces do not know enough about the needs of people with disabilities or simply do not carry out tests with them to eliminate deficiencies and other potential problems.

So, please remember that carrying out usability tests is not only about websites or applications but also about the public spaces.


Sources:

ninds.nih.gov/Cerebral-Palsy-Hope-Through-Research