ABOUT CEREBRAL PALSY

How can I Be an Ally to the CP Community?

We at the Cerebral Palsy Association of Newfoundland and Labrador have taken it upon ourselves to compile some of the information available on being an ally to people with cerebral palsy. Please remember that much of this information is generalized to cover more ground in a smaller space. Always listen to each individual with CP and/or their care providers to find out what the person wants or needs from you when it comes to allyship. Ask questions and listen to be the most effective and helpful ally you can be.

Quoted directly from cerebralpalsyguide.com:

https://www.cerebralpalsyguide.com/blog/how-to-be-a-cerebral-palsy-ally/

 

What is a Cerebral Palsy Ally?

 

Cerebral palsy allies support individuals diagnosed with cerebral palsy. Allies take action to bring awareness to the condition and are a very important part of the cerebral palsy community.

 

“In my life, the best examples of disability allies have been my close friends and family, who respect me and support me to be as independent as possible, without making assumptions for me or making me feel like a burden.” - Liz Johnson, Paralympic Swimming Champion

 

Why Being an Ally is Important

 

Being a cerebral palsy ally is important to prevent discrimination and social prejudice against disabled individuals. Oftentimes, this discrimination comes from the unconscious belief that those without disabilities are superior.

 

A cerebral palsy ally knows that individuals living with cerebral palsy are just like us. They are their own person with their own goals.

 

“You cannot lump us all in together. We have complex individual needs, interests, desires and goals for our own lives […]” - Hannah Diviney, Writer and Disability Advocate

 

Ways You Can Be a Cerebral Palsy Ally

 

The most important way to become a cerebral palsy ally is to treat disabled people as you would non-disabled people. It is important to make individuals with cerebral palsy feel important and heard.

 

Ways to become a cerebral palsy ally include:

 

  • Be very aware of the language you use and be respectful

  • Celebrate World Cerebral Palsy Day and National Cerebral Palsy Awareness Month

  • Donate to cerebral palsy research

  • Educate other people about the cerebral palsy community

  • Ensure you are not creating accessibility problems for handicapped individuals

  • Learn how to address your child's questions and fears compassionately

  • Read books about disabilities

  • Remember that every person is different – not every individual with cerebral palsy has the same story

  • Talk to people who have cerebral palsy and learn more about their story

 

  • You are not entitled to touch the body or assistive equipment of those with cerebral palsy

 

If you think someone needs your help, ask first. The person will know their physicality and when they need assistance far better than you do.

 

If offering help, it’s useful to first consider two questions:

 

  1. Does the person want assistance?

  2. If yes, what do they need you to do?

 

Tip: Do not take it upon yourself to start pushing someone’s wheelchair. Think about how you would like a stranger to pick you up and carry you without asking.

Quoted directly from the Ontario Federation for Cerebral Palsy:

https://www.ofcp.ca/about-cerebral-palsy/#m

 

Taking on Barriers

CP, in and of itself, is not a barrier to leading a full and satisfying life. People with CP face many barriers and obstacles that have little to do with their physical or cognitive abilities. These barriers are caused by external forces such as: inaccessible buildings and transportation, societal attitudes, and exclusion from education and employment opportunities. We all have a role to play in breaking down these barriers and ensuring that the rights of all people are honoured. Taking on barriers can be as simple as being aware of our own biases and prejudices when we are interacting with others.

 

When you meet someone with CP

Language and attitudes are very important. If you do not have experience interacting with people with CP, there are some key things to keep in mind. These tips will help you to remove barriers so that you and the individual you are communicating with can enjoy a rich and engaging interaction:

 

  • When interacting with someone who uses an alternate form of communication, take a moment to determine how the individual communicates (symbol board, voice synthesizer etc.)

  • A person with CP would rather repeat themselves than to have someone pretend that they understand. If you are not sure what someone said- ask!

  • Try not to assume that because someone talks differently they also hear differently. Try and speak the same way you would to anyone else

  • For many people with CP the muscles around the mouth and throat can be challenging to control. Do not mistake slow, slurred or halting speech as an indication of someone’s intelligence. It can be very frustrating for someone with CP to be 'talked down to' by their peers

  • Try not to interrupt or cut off someone who speaks more slowly than you. Just because someone with CP may take longer to get an idea out does not mean that their ideas are less important than yours

 

Inclusion and Participation

People with CP are people first and it can be extremely frustrating to be treated differently. Never describe someone with CP as “wheelchair bound”, “spastic”, “afflicted”, “suffering”, or “handicapped”. These terms are very hurtful and negative. People with CP do not want pity or charity but rather the right to full inclusion and participation. At times access to full inclusion and participation requires the use of assistive devices, personal attendants, adapted vehicles, specialized programming and so on. People with CP and their families will often have significant personal financial costs associated with gaining equal access to all areas of life.

Quoted directly from a 2016 blog post titled “What I Want Allies to Know on World Cerebral Palsy Day,” by Jessica Paciello:

https://themighty.com/2016/10/what-i-want-allies-to-know-on-world-cerebral-palsy-day/

 

“People sometimes ask me if I would cure my CP if I could. Of course, there is no cure, but if there was, I would politely decline the offer. Most people with CP (I cannot speak for all, of course), including myself, are accustomed to our lives the way they are. We adapt to our surroundings on a daily basis and know how to function on our own terms. I am used to the way my body works, and although you may feel pity towards someone like me, I am perfectly OK with my imperfect body. […] Please reflect on the way you treat others, and carry out your actions with kindness, and not with malice or pity towards others.”

Of course, another good way to be an ally is by volunteering to help facilitate programs and services that help people with cerebral palsy. CPANL offers plenty of opportunities to volunteer, whether that be for a fundraiser, a special event, telephone surveys, office or technical support, or any number of other positions. Volunteers make it possible for organizations like ours to help people with CP reach their maximum potential, whether that be through recreational programs, social opportunities, or financial assistance, and we can only do those things with the help of our amazing volunteers. For more information on volunteering with us, visit our volunteer page.