I am not an alien I'm a human with cerebral palsy.

Richard_Scope
Richard_Scope Posts: 3,737 Cerebral Palsy Network
in Cerebral Palsy Network
Stephanie Esther Fam is a multi-disciplinary artist who lives with cerebral palsy. In this interview, she shares her thoughts on growing up with a disability and dealing with attitudes from wider society.
https://youtu.be/YIZ0qGovsD4
Personally, I prefer direct questions about my disability because it gives me an opportunity to educate somebody. I understand that everyone feels differently about being approached and asked. How do you answer?

Comments

  • Poppy_
    Poppy_ Online Community Member Posts: 192 Empowering
    Hi, I am the same, I answer any questions directly because I would rather someone asked then be presumptuous or have the wrong idea of the way cerebral palsy affects me.
  • chiarieds
    chiarieds Online Community Member Posts: 16,698 Championing
    edited April 2022
    I think how members who have a disability approach this is the same whether it's CP or not. When I've had a question as to why I use crutches, when I feel it's a genuine enquiry, I'll just say I have a genetic disorder that's affected my joints, so have arthritis in many of them, & using crutches helps. I hope this educates a little without going into any specific detail.
    When I feel, on rare occasions, that I have actually been questioned, then I say I have the hypermobile type of Ehlers-Danlos Syndrome associated with Chiari 1 Malformation; wait for the jaw drop, & don't say anything more, as unfortunately you can't educate everyone.
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    I know it's different but ..... our youngest son was born with club foot.
    From birth to 2yrs he was in plaster cast.
    I stopped going to the health clinic to get his health checks why because of Adults.
    Children were great they asked what was wrong with him - Adults i found were very rude they would just whisper i even heard one say "i wonder how he had his legs broken" very rude.
  • chiarieds
    chiarieds Online Community Member Posts: 16,698 Championing
    Hi @SueHeath - my youngest, our son, also had bilateral talipes (club feet). He didn't have surgery until he was 14 months old. I must admit I hid his feet most of the time. I didn't have any adverse comments about him, but with our youngest daughter, who needed a trache at one week old, on a long train trip down to London to see her ENT specialist, I was shocked to hear one person say to her companion that 'it' shouldn't be allowed out. To this day I regret not saying anything. Our youngest daughter was incredibly bright; she astounded all of her Drs including those at Gt. Ormond St; she didn't need suctioning from when she was just over a year old as had found a way to cough herself, & wipe any secretions away, then ask to be lifted up to wash her hands as she'd watched me too much after suctioning her! All these adults on the train saw was her trache; she was fine, & as usual didn't need any suctioning.
  • Jo_2022
    Jo_2022 Online Community Member Posts: 295 Empowering
    Hello @Richard_Scope :) . I feel touched and moved after seeing Stephanie Ester Fam’s video. What a humble person she is. Thanks so much for sharing this.

    I believe questions can be asked in a gentle way without judgement. It’s when questions become offensive, or inappropriate you begin to think to yourself what is the intention behind it, and does the person realise they are hurting someone’s feelings. People with disabilities deserve the same respect and dignity as able bodied people; bullying, disability discrimination or harassment is never acceptable. I felt sad hearing Stephanie being questioned about things, like can she get pregnant, or can she have sex with her Cerebral Palsy. I feel able bodied people do not get asked these same questions, then why does Stephanie get asked these questions.

    “I am not an alien I’m a human with cerebral palsy.” 

Categories