Those two words are super loaded aren’t they? And even more so when together. I want to share how a disability effects the immediate family but it took me awhile before I could figure out how to do so… respectfully. By no means is this a call out or criticism of anyone in particular. This site is my baby and perspective and has absolutely no right to involve anyone else in the public sphere. I’ve never been one to try to light relationships on fire and will not start doing so now, even if everything I say is true. There are however some non offensive observations I can make without naming people.

The first observation is perhaps the most obvious: disability makes life complicated. I don’t mean just for the disabled person either. The entire family and even extended family in some cases is impacted. One person or parent often becomes the primary caregiver out of simplicity. Just stemming from that, the family is off balance emotionally. The person who is disabled automatically has a higher level of trust with the person that is their caregiver than anyone else. Even if the caregiver has a partner. Beyond that, the caregivers’ partner might have an underappreciating view of what the caregiver does. In turn resentment and sometimes full blown animosity can be created. When siblings are also added to a home with a disabled person, a necessary difference in physical attention can also breed resentment as well as valid feelings of unequalness. With all of this taken into account, it’s not a big surprise that “surveys show that the rate of divorce in families with a child with disabilities may be as high as 87%”, (Ann Gold Buscho PhD, Psychology Today). I have met several people (usually English teachers) that have oversimplified disability into a one dimensional problem with society. This view discounts the very real impact on those closest to the disabled person. Disability stems from an unequalness of ability and since relationships stem from an ability for people to carry the same amount of responsibility, it can very easily get out of hand.

The second observation I have made is how little support there is for families that have a purely physically disabled child or member. There are a lot of resources for those with mental disabilities like cerebral palsy or down syndrome but the moment the issue is completely outside the brain, the disabled person is no longer qualified. As a disabled person living in California, I am only qualified for limited free professional nursing a few hours a day through the state and SSI money since I am too bad off physically to work. I was qualified for an employment program as well but it has been crickets since they understood how limited I am in my physical disability. My nursing is covered by Maxim Health Care Services and current allowed hours are 8 AM to 3:45 PM Monday through Friday. Any other time and my mother takes over completely. Caregiving is hard work especially when done so often. There’s no real support system for people like my mother. When there is only one pillar of support in your life, it’s terrifying to know that pillar is wearing itself out in order to keep you up. Either family or the government needs to step up so caregivers get a break. Seeing my mom wear herself out also has the effect of making me feel like a burden on occasion. I imagine that others in a similar position can feel the same way if they are not introspective enough to recognize the fact that it is not their fault. This lack of support is far reaching either way because it effects multiple people.

The final observation I’ll mention here is the feeling of being trapped. If the family is not going well like the 87% mentioned earlier, the caregiver can often not leave the situation on their own. The caregiver is usually too busy or exhausted to work. This forced them to rely on someone else for income and to be codependent no matter what. I’m not saying that families are perfect. It’s very common that families have issues. What I would like to point out however is the ability for people to leave if it becomes too much to handle. Physically disabled people cannot leave their environment or move out. Caregivers cannot move out because of financial reasons. This is incredibly stressful and even dangerous under the wrong circumstances. I cannot do much on my own but I hope for some kind of safety net eventually for people like me and their family.

Overall, it’s a very complicated and messy situation. People make the best out of what they are dealt but I truly think it does not have to be that way. Action comes after awareness and I hope at least one person acknowledges these three observations. Maybe then steps can be taken to make the world a better place for a hidden but very real minority. Feel free to comment your thoughts below.