I’m unflinchingly determined to continue to expose what I believe to be human rights violations in particular against people living with dementia, of any age, and of our families. That someone else may not see something I beleive to be a violation, or that I am accused of being wrong, or of blaming people for the violations, will probably not stop me.
Many people are prone to take things personally, and some people take my activism personally, as if it is an attack on them. My activism is never meant to be personal, although it may be too blunt, and hence some may be offended. Their reactions are their responsibility, not mine, and should not be an excuse to be unkind or to bully me.
Care partners and family members who are caring for someone with dementia at home, or have done, and then placed someone in their care into residential care have attacked or bullied me more than any other cohort over the last 14 years. Perhaps this is because they get so little support, they are isolated, the financial impact is unbearasble and unreasonable, the funding is totally inadequate for people over the age of 65, the NDIS discriminates against people with disability over the age of 65, and they are often so exhausted and injured by the experience the only reaction thay have left in them, is to attack someone questioning institutionalisation or segregation in residential care. I believe they are suffering, as I too have been a care partner for people with dementia (who have since died), and I still feel sadness and guilt for having placed them into residential care, and wishing the ‘system’ supported us all to care for people we love at home, or that there were assisted living options that we non-institutionalised and that did not segregate.
However, the bullying and attacks on me really angers my husband, and I often feel people who have continued to abuse me, especially online through social media or in virtual meetings, are very lucky that due to covid, there have been no opportunities for him to meet them in person.
We all need to think before we speak or type, about whether what we are saying is kind, true, helpful or necessary.
One ‘gift’ dementia has definitely given me, is a ‘thick skin’.
thick skinned
meaning: insensitive to criticism or insults.
synonyms: tough, impervious, armour-plated, invulnerable, unsusceptible, insensitive, seasoned, tough
That is not to say, I am insentitive to them, it means I have found ways to survive them. Sarcasm, subtle and the not so subtle accusations, verbal or online abuse and bullying does upset me, and sometimes it causes me to go to bed distressed and crying for days on end.
Underneath my radical activism, I am by nature an introvert, and used to be overly sensitive. In fact, I had to learn to be an extrovert as a child, just to survive my childhood experiences. Simple things such as learning, reading, writing poetry, and listening to classical, or indeed, any music, was unacceptable to my father. In his view, girls were meant to serve men e.g., cooking and cleaning, and then get married to men, and breed.
Being sensitive was also seen in my family as being weak. It still is by many.
As my dear friend, the late Richard Taylor and I used to say, and sign off in emails to each other, onwards and upwards, in spite of the ever increasing fog.
