No: A Vocabulary Makeover


A parent requests the disability supports a family member needs. A person on fixed income applies for increased rent subsidy to match increased expenses. Access to mental health services is required. "No" is a word heard repeatedly by people accessing social assistance.
As I waited in line to pick up a cheque that could not be mailed because of the current postal strike/lock out in Canada, I heard many forms of "no". I believe it is time for a vocabulary makeover:
  1. That's not our mandate: This response tells me the service provider is system oriented, not client oriented. The potential client is dehumanized as their needs are externalized into a checklist. It is emotionally easier to say no to a piece of paper than a person. For the applicant, it is challenging to not take the rejection personally.
  2. Your friend gave you the wrong information: This typifies the mistrust service providers can develop towards their potential clients. It also undermines the social support of friends - especially when friends can be as hard to find as disability resources.
  3. Not matching the language ability of the person requesting services: Sometimes technical jargon creates barriers. An individual striving to communicate in a language not his own was met with the words transaction, timeline and review. Already overwhelmed, he left with no assistance and greater confusion.
  4. That's all we can do: Defensiveness. Again the focus is on the agency and not the client. There seems to be an assumption the person in need should be penitent for having needs. The tone of the reply treated the request as an imposition.
  5. I can't give you that information: This hardens the us/them mindset. Another reminder of who lives on which side of the haves and have-nots.
Now take a deep breath and read my proposed makeover for each situation above.
  1. I can see your needs are significant. Let's see where we can work together: Validated needs and teamwork add dignity. Service agencies participating in community networking produce referrals to other services.
  2. I'm thankful you are connected to supportive people. The client came, which can be the biggest hurdle. The service provider can clarify any misinformation without pointing fingers.
  3. Provide written information in simple vocabulary: As a person with Autism Spectrum Disorder, being given a flowchart of the application process adds time for me to digest the instructions. Contact information for further assistance for each step provides hope during wait periods and increases the likelihood that the application will be completed correctly the first time around.
  4. I know what we can provide isn't enough to meet your needs. I wish we could offer you more: Needs are complex. I don't know of an agency which meets every need. Yet each strand added increases the strength of fabric.
  5. I value the confidentiality of the personal information our system requires you to share. It is hard to tell a stranger personal history and financial information to qualify for programming. It is reassuring to experience confidentiality affirmed.
I understand that budgets are stretched and wait lists are long. Sometimes "No" is the only response that fits a service agency's policy. However, I believe "No" can be said differently - in a way that lowers institutional defensiveness and restores dignity to those with the courage to ask for help.
What other "No" makeovers would you add?

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Four Reasons for Five More Years


June 2006. Back on the psych ward for the sixth time. Medications conflicting. Over 200 pounds. Not knowing how to continue living, but not wanting life to end.
Dear 34 year old me,
Thank you for holding on to Life. I couldn't write to you otherwise. Please read carefully. The state you are in now does not reflect who you really are.
  1. Loved: Through losing those you most deeply love, you will discover that your identity is secure. The people who return to your life in addition to the new friends and connections - each one will become a gift to love. You will no longer snatch what love you can from others because your heart has more than enough love to give.
  2. Accepted: The severe rejection you face will intensify. Eventually even the system will not want you. When you receive your diagnosis of Autism Spectrum Disorder, you will begin to accept yourself. Yet even that acceptance will not be enough. You will trade rejection for acceptance from the one who will never spurn you.
  3. Valuable: You will never believe this! (I guess you will in five years) Daily you will receive invitations to share your journey and thank yous from those who describe you as inspiring, raw, encouraging, genuine. The accolades will come. Please do not choose to see your accomplishments as your source of value. You are equally valuable right now. I think deep down you know that already. That is why you want to live.
  4. Secure: What are you depending on most? Your house is paid off. You belong in a family. Your keen intelligence confounds the nurses caring for you. I'm going to let you discover what happens. Without the journey ahead, you would feel lost in your current location. When your circumstances and feelings squeeze out your dreams like juice from an orange, what remains is enough - everything else is bonus.
June 2011.  Equipping individuals with Autism Spectrum Disorder and those who support them. 85 pounds lighter and healthy. Enjoying the challenges of raising my three children, two who also live with Autism Spectrum Disorder. Participating in policy discussions  - invited because of my experiences. Living more in step with Life each day.
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Born Blue

Twelve years ago today I heard the most amazing sound - my son's cry. After waiting longer than I can hold my breath, he took his first one. And let out a scream that lasted most of his first year and much of his second, third and fourth year. He punctuated the next few years with bursts of screaming, but his language abilities have held him up under all but the most trying times. Now he will scribble a scream, or write very large.  For which my ears are thankful.


But his first scream? That was beautiful.
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