About the Author: Lori defines herself as a "queer, sex positive disability and mental health blogger". She lives with Ehlers Danlos Syndrome, M.E. PoTS and co. She's an incredible writer that never turns away from a typically 'uncomfortable' subject. Her honesty and vulnerability on her platform about everything related to disability separate her from the rest, and we love it! She has written some amazing pieces for Liberare before, and if you haven't taken a look at her work you definitely should check out her Instagram here, and her website here to read her latest blog!
What we have learned from lockdown
As a society we have proven what the disabled community have been urging for years: it is completely viable to adapt a vast array of services and working procedures to accommodate public health and prioritize wellbeing.
It’s possible to maintain friendships and family connections for those with the technology - however for those who haven’t got the means to source a webcam and access the internet to use video call apps, we can still phone/email/write if visiting is reduced or not possible.
We can still maintain relationships within friendship groups without being left out.
You can establish a flexible plan to unwind and have fun w/ friends/family/partner(s) throughout the week
- Starting a TV series together (Netflix Party, Hulu, Zoom, On-Demand streaming services)
- Movie night (take it in turns to choose a film - which accommodates all parties of course (certificate/content warnings/CC/AD
- Game night
- Taking part in an online book club, or audio book club, with family members, friends, or a partner(s)
BENEFITS OF DOING SO:
The exertion and cost of travelling to a location can be an issue, especially considering those of us with dysautonomia or ME/CFS often struggle with depleting energy stores and physical and cognitive lethargy.
Comfortable in our own home - we have a guaranteed bathroom we can access, we can lie down if needed, if you experience an unexpected symptom flare, you needn’t worry about having to travel home.
More accommodating when easing back into non-essential activities after having a bad symptom flare, as we can pace ourselves and balance this with emotional wellbeing and relationship maintenance.
More flexible if you need to cancel/rearrange a time to accommodate the need to carry out personal-care tasks, taking a nap, etc. prior to talking and it removes the sense of guilt we may feel if we had to do this and affecting someone’s travel plans.
Life with a disability can be turbulent, unpredictable, and overwhelming, therefore in both disabled and integrable partnerships there has to be understanding - the need for active and effective communication with those in our lives has been highlighted during lockdown - and this isn’t a bad thing. It’s highlighted because it’s an essential element of our relationships - the foundation.
As someone with a chronic illness who’s dating a chronically ill gal, I speak from the unique perspective of someone who’s partner can empathies and truly understand the importance of pacing ourselves, making our needs known, and being honest with each other about what we need - rest, space etc. We both have EDS/HSD, ME/CFS, PoTS, and related conditions.
These comorbid illnesses are difficult to manage and navigate, and it can often feel like people don’t understand the severity of our symptoms - the toll it takes on our daily lives; why we can do some things and not others, why we can’t do something one day that we did another.
This is emotionally difficult and can bring up some unpleasant feelings, so it is incredibly beneficial to have the understanding of my partner.
Applying what we’ve learned in post-pandemic life
As disabled folkx, we are used to having to apologize for making our needs known, for communicating that we require the accommodation of additional needs to be ensured. I think that lockdown is a prime time to reflect on our worth as a disabled folkx, our security within our disabled identity, and working on our communication skills with those around us by refraining from apologizing when asking for support.
For example if you, like me, have a long-term health condition (LTHC) our additional health needs are going to continue into post-pandemic life. So we can use lockdown as a time to find ways to ensure inclusivity within our friendship groups - especially if the group is integrable! Furthermore, if you are able-bodied and have a disabled friend, partner, or family member - please ensure you actively convey to yourself, and your mutual friends the importance of accommodating your friend’s needs; because it’s not ‘special treatment’, it’s practicing anti-ableism.
This pandemic has been incredibly hard to navigate and attempt to adjust to within a rather short period of time, but thank you to people who are social distancing, wearing masks, gloves and who are doing all they can to support the vulnerable during this time. Stick in their honey; you’re worth it.