Motivation – Community – Education
Be a part of the change by bringing Rachel for a Speaking Out! advocacy event in your community today.
Living with Ehlers-Danlos and hypermobility spectrum disorders is no small feat. Frequent misunderstandings lead to minimizing of symptoms and lifestyle choices by parents, teachers, doctors, and friends.
The reality is that hypermobile Ehlers-Danlos and joint hypermobility syndromes are as common as 1 in 600 people. And even though other EDS types are more rare, they all share the reality of the more malignant features of hypermobile conditions.
Research into EDS and its 14 Sub-types is expanding on a daily basis, and the need for awareness of its prevalence and the malignant features of even the more benign end of the spectrum is critical to every sphere of society.
- Schools and Youth Development Programs
- Sports Programs
- Dance Programs
- Parenting & Development
- Occupational Therapy Practices
- Physical Therapy Practices
- Primary Care Clinics for adults and children.
- Hospitals, Emergency Rooms, Urgent Care
- Workplaces and HR Heads
- Churches and Civic organizations
- Military and Law Enforcement
- Daycares and Childcare Programs
Please consider Rachel Lee as a resource and tool for YOUR community’s awareness and growth.
The Autism Spectrum
Knowledge of Autism has made leaps and bounds in recent years. But understanding of autism and autistic people remains, in many spheres, in the dark ages. Clouded with negativity, fear and depression, Autism is treated as a disease that must be cured and fixed. As an autistic woman and mother of two autistic children, I am passionate about changing that narrative perspective.
Let’s talk about the incredible realm of non-verbal communication. Let’s talk about helping autistic children love who they are, and feel loved at all ends of the spectrum. Perhaps some of us need more support than others, but as long as we are considered alien or even inhuman by the non-autistic community, the many gifts, abilities and joys of the Autism spectrum will never shine.
The majority of individuals on the autism spectrum are ALSO on the hypermobility spectrum. A Spectrum which those of us with Ehlers-Danlos understand very well. Joint pain, muscle aches, soft tissue injuries, nerve pain, binocular vision dysfunctions making teachers and parents think we can’t read or have uncontrollable ADHD, autonomic dysfunction making us constantly dizzy and off balance, and even more severe neurological and spine manifestations may be working against our efforts and the efforts of our loved ones to help us.
Unlike non-autistic people, however, many of us cannot tell you how we feel and how pain might be impacting our lives. From physical health and mental health, to friendships and learning to speak Autie, let’s talk, share, and change the spectrum of Autism from one of darkness to one of hope. Let me introduce you, teachers and students, to some of the most loyal, imaginative, dedicated people you will ever meet. Let me share with you, caregivers, about the love and joy your child may not be able to communicate in a way you can feel it.
Let’s Speak Out – About Autism Awareness.
As patients with a chronic illness we often face people who minimize our conditions or ignore them altogether. We experience dismissive and ignorant attitudes in our work places, churches, schools and families in ways which undermine our fight for stability and long term physical health, not to mention our mental health.
Much like the neuro-divergent spectrum, patients who live with a chronic condition tend to speak a different language than those around them. We have dialects for masking our pain, or expressing it with emphasis in contexts where we desperately need the support of those around us. We have a dialect for discussing our conditions up front, with medal language and terms others may not recognize but is necessary for us in order to keep perspective on our health care, or to persuade physicians for help.
Whether you represent a patient community in need of support and encouragement, a workplace seeking counsel on better practices for its employees, or a social community seeking greater awareness and understanding of those suffering from a chronic condition, consider Rachel Lee as a source and tool for growth and inspiration.
“There is no greater agony than bearing an untold story inside you.”